Exploring Geneva with my colleagues

(Excerpted from Memories that linger: My journey is the world of disability by Padmani Mendis

My responsibility (in Malaysia) was to facilitate two training courses. One was five weeks long and was for social welfare assistants and other officers from the district who will initiate CBR here in this part of Kuala Terengganu. The second of the courses was for two weeks and was for social welfare officers from other selected states as well. Participants of this second course will be responsible for planning and developing CBR projects in their own states. We discussed how monitoring and evaluation could be carried out as a continuous process during project development and the material in the Manual for measuring these.

All through my three-month assignment I had as my national counterpart a Social Welfare Officer from the Training Division of the Ministry of Social Welfare. She was an experienced trainer and we shared our teaching tasks. When I left, I was confident that she will be quite capable of carrying out the training function that we had carried out during our time together. The Secretary of the Ministry in Kuala Lumpur and that of the State took personal responsibility to ensure the CBR programme will benefit their disabled people.

In Batu Rakit, the work that was started during the training course blended with field work. In both courses it was possible to spend much time in field learning and teaching. We met community leaders in Batu Rakit for mobilisation. We also made visits to the homes of people who were in need of interventions. Many children were not going to school. Some immediate improvement was evident soon after starting CBR. Two children started going to kindergarten. Others who had been isolated before were participating with the family, going visiting together and so on. Many showed functional improvement.

The seed had been sown. How would it grow?

Two disabled individuals and another family stand out in my mind from those that we visited. One was a baby boy called Imran, six months of age. Imran had been born without both arms. He was not sitting up by himself as yet and spent most of his time lying on his mat and cooing. His mother appeared not to know quite what to do. We talked with her and introduced to her the possibility of teaching Imran to use his feet as his hands.

She welcomed the idea. His mother propped him up with pillows and gave him the toys that lay around him to hold. Imran soon caught the idea. It is of course natural that babies should do so. It is just that the mother either had not thought of the possibility, or did not want him to use his feet for some reason.

When we returned a few days later we found his sisters playing with Imran with great fun and making lots of noise; they were throwing back and forth a colourful cloth ball. Other playthings lay around on the floor. The Social Welfare Assistants taught Imran’s mother how to use the package on play activities from the Manual to take his development further. They taught her to assess at which stage of development Imran was at in areas such as communication, movement and so on. Then they showed her how to select corresponding play activities from the Manual to take him to the next level of development.

We visited Imran once more before I left. He was now sitting up on his own. And he was discovering with joy what a lot he could do with his feet. Later he would stand, walk and run about with neighbourhood playmates like any child would. He would go to school and out on trips with his family. Grow up to be an independent young man. He may now be in the fourth decade of his life. Where are you now Imran? How are you doing?

The second individual was Ayu, a young girl of fifteen years. She had Down’s Syndrome with some intellectual impairment and difficulty in learning. Here the mother cared for Ayu completely not letting Ayu do anything by herself, including washing, bathing and all other self-care activities. Ayu never went out of the house. We talked with both mother and daughter who were alone at home at that time. Ayu talked with us and responded to us shyly. We asked her whether she would like to be able to feed herself so her mother could do something else at that time. She nodded her head happily. The Social Welfare Assistants talked for some time with mother and daughter. They talked about going out to meet neighbours.

After explaining to them about it, the Social Welfare Assistants left relevant material from the WHO Manual for the mother and daughter. They asked them to look at it and see if they could do some of the things that were suggested. When we went back in five days the mother was preparing the family meal. Ayu was sitting with her in the kitchen cleaning vegetables. The mother said that Ayu was helping her now with simple tasks. The mother took Ayu out to the village – Ayu had gone with her to a meeting of the women’s group the previous day. Ayu had been very happy and the women had talked a lot with her.

The third I recall is of visits to a family. A home we visited quite early on in the programme. When we entered, we found the family ready to receive us. The mother, father and with them, three young children. The two older children lay on mats while a younger child was sitting up. All three were boys. All three had a progressive muscular condition. All three had gone to school but as each reached the age of ten to eleven they had dropped out because they could no longer move independently. Now the older two had to be fed, washed and clothed. The youngest needed assistance. We talked with the family for a while. The biggest problem I saw here was that the family was completely isolated with no help and no social support.

Afterwards, I discussed with the Social Welfare Assistants what they would do to improve the situation of the boys and the family. I visited this family again before I left. The mother, along with the three boys, greeted us with a smile. She said her husband had been found work with a farmer. She herself no longer felt alone because her neighbours and even the community leaders visited her. She had made two special friends in whom she could confide. One would sometimes stay with the boys so she could go out to visit family and friends.

Former school friends of the boys visited. They shared with her boys some of what they had learned at school. She felt what was important is that her boys now had friends with whom they could play and interact.

The Social Welfare Assistants were hoping to soon deliver three wheelchairs to the home so that the boys could be taken out into the kampong. So here, in the presence of severe disability, the therapy or the medical rehabilitation required by the boys was not available. But the social impact of CBR was remarkably evident.

Many are the stories of how a visit from a trained Community Worker could make such a difference to the quality of life of individuals and families living in somewhat different circumstances. How will Ayu’s life change with the visits from the Social Welfare Assistant and with interest taken by the women in the village? The Social Welfare Assistant planned to join a meeting of the women and then take Ayu to other activities in the village. Will this make a difference to other disabled people in the village as well as to Ayu? What will be the quality of life of the three boys? Time will tell.

Malay Houses

Although the rest house in which I lodged was made of brick and mortar, other houses in the Kampongs were stilt houses. Kampongs are what villages are called in Malaysia. Stilt houses are the traditional Malay architecture. Wooden houses built on thick strong pillars. There is a central pillar surrounded by may be by six to twelve pillars spaced around the periphery and some closer to the central pillar, depending on the size of the house. The roofs were also made of timber. They were high allowing for good ventilation in a humid climate. The walls of the houses in Batu Rakit were made of wood because that was plentiful. I was told that in some areas walls were made of bamboo. The space under the house was used for storage.

Houses were generally spaced out in large compounds. In their compounds owners had planted trees which they could use in twenty to thirty years to refurbish their houses. Or to extend a house when a child was getting married and needed a home. Extended families lived together, cooking together as one household. I was glad I had lived in Batu Rakit and experienced their traditional lifestyle when I visited their homes.

One entered the house on a wooden ladder. At night they took the ladder up to prevent small animals like rats and bandicoots from climbing into the house. I would not have experienced this traditional Malay architecture and lifestyle had I been confined to Kuala Lumpur as I was on subsequent visits to Malaysia.

Gunnel Nelson

Gunnel Nelson, my much-loved friend and travel companion on my CBR Journey passed away in July 1984. She met with a fatal car accident in Zambia while on an assignment for UNICEF. The assignment concerned improving the lives of disabled children. A cause that Gunnel was devoted to since she started working as an Occupational Therapist, and later as the Principal of the School of Occupational Therapy in Goteborg, Sweden.

With her sudden passing away CBR suffered an unexpected loss – the loss of a human being who would have hastened considerably improvement in the quality of life of disabled people in developing countries. She was firm in her beliefs and convictions with a rare ability to take action to realise them. Like her fellow-Swede Einar, she empathised with the poor and vulnerable and worked tirelessly to bring them social justice. Like Einar and me she was convinced that CBR would initiate changes required to bring disabled people that social justice.

Gunnel and I first met in Geneva in May 1979 when we came together at WHO to work with Einar on developing a strategy for implementing WHO’s new disability policy. Our work in CBR was targeted at enabling disabled people come out of their isolation and exclusion and be included and be participating members within their families and their communities.

Gunnel and I had similar but separate roles in this work. She travelled to certain countries and I to others. But in those all-too-brief five years that we worked together, we met regularly in Geneva and at meetings held in other parts of the world; meetings which brought people together to discuss the way forward for disabled people through CBR. Although the concept and implementation of the CBR system was pioneered in Geneva as a seed, nurturing the growth of it was a global effort involving too many countries to be counted at the time of her passing away.

Gunnel’s work flowed from Geneva like mine, with assisting countries to set up field trials of CBR. She visited first Nigeria in January 1980 for three months. A research project was set up jointly by the WHO Collaborating Centre for Research and Training in Orthopaedics in Lagos and the National Youth Service Corps. She followed this up with a visit in December of the same year.

Her next task was to set up a research project in Kerala, India in collaboration with the Department of Physical Medicine and Rehabilitation of the Medical College in Trivandrum. Her counterpart was Prof. P.B.M. Menon. Before starting on the project with Prof. Menon she visited the WHO South-East Regional Office in New Delhi for discussions. She also met other Rehabilitation Specialists first in New Delhi and then in Kerala to inform them and their institutions and seek their support for the project; and similarly, with the Ministry of Health in Kerala and other professorial staff at the Medical College in Trivandrum.

From Kerala, in November 1980 she proceeded to the Philippines to evaluate the progress made in the ongoing field trial of CBR and of the WHO Manual in the Rizal District of Metropolitan Manila. The project used Primary Health Care as an entry point with PHC workers who had been trained for two years. As in Bacolod City where the Philippines had their first experience of CBR, the urban project here commenced with an intensive information programme.

When we had an assignment in Geneva, Gunnel always drove down from Goteborg so that we had the use of her car in Geneva. Many a time she offered me the use of it. I told her I would not dare to drive in Europe. All those multi-lane high-speed highways and one-way road systems had me quite confused even sitting by her side as a passenger. In these circumstances, I could never be a navigator either.

It was not too difficult to find accommodation in Geneva for a period of three months. Sometimes we stayed separately, sometimes we shared an apartment. I recall how amused she was when once I stayed in a guest house run by the Salvation Army. I had selected it because it was located in the old city which I thought would be interesting.

It was. Only after I went into occupation did I know that it was maintained for retirees from the Red Light District not far away.

The ladies would come to breakfast in flimsy negligees with their faces made up as they would have been made up when they were employed. The trade was lawful in Geneva. The occupant of the room next to mine was quite elderly and confined to bed. She was looked after 24/7 by staff of the guest house. Still dressed in her flimsy negligees. Still with her face made up immaculately.

Most Saturdays we spent working. If we did not, I was out window shopping. On Sunday we would relax, driving out of Geneva. Sometimes we drove around the picturesque countryside of Switzerland through pretty mountain villages. In the spring and summer colourful wild flowers covered every available space on roadsides and spread up the mountainsides. But to me all this appeared to be organised just like all else in Switzerland. I felt that the flowers had been planted there by human hands. Not really wild. But of course they were wild. Just God’s wonders.

One Sunday we drove through the very old village of Gruyere famous for the cheese it produces. Outside this village high up in the Alps, fat and healthy cows were grazing on the mountain sides.

Other Sundays we drove in the French countryside. More often than not I had no French entry visa. But this was no obstacle for someone who knew the back roads where there were unmanned border posts. We would drive around and find a Michelin recommended restaurant to enjoy a late lunch.

On Sundays roads in France were deserted not just of vehicles, but there were no people to be seen either. When once I remarked on this to Einar he said to me, “Do you expect to see people as you would in your part of the world?” Sunday, for the French, was a day spent with one’s own family at home. For us, it was largely visiting extended family and friends. And catching up with the weekly marketing.

Gunnel and I enjoyed the food of foreign countries. In Geneva, after a long day of work, we indulged in dinner at different restaurants. One of our favourites was a Turkish restaurant popular for its Doner Kebab. Lamb grilled on the spit to perfection and served as slices as thin as paper.

In autumn as the weather became colder it was time for genuine Swiss Cheese Fondue – two or three special cheeses melting and blending together in a pot into which one would dip cubes of soft bread and pop them hot into one’s mouth. My favourite Swiss food was Raclette. Although here traditionally, the melting slices of cheese were served on potatoes, I preferred this on toasted bread. Eaten with pickled gherkins and onions.

Knowing my liking for steak, Einar would, on each one of our periods in Geneva, take Gunnel and me to enjoy a good French steak at the Café du Paris on the Rue du Mont Blanc in the centre of the city. Such a popular spot that we had always to stand in a queue to get in.

Before my first visit to Geneva in 1979 I did not drink wine. Associated this with alcohol. But dining out so often with those two Swedes, that habit soon changed. After some time I was persuaded to, “Just try it. Have a sip.” I enjoyed it so much that before the end of three months, I could drink three glasses of it with a meal. And feel no effects of it.Those days in Geneva were memorable – both for the work we did and for the enjoyment we had. I missed having Gunnel to work with. She still lives in my memory from day to day.