Starting work at WHO in Geneva with the Community Based Rehabilitation Project

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

All arrangements were made for travel on May 14. In those days the Swiss visa was obtained over the counter. Flights were frequent. Ticketing by Swiss Air was quick and easy. And made easier by an accessible manager. Punctual departure, smooth take off, much napping on the flight, it did not seem long before I awoke to hear our arrival in Geneva being announced.

As I looked out of the window dawn was just breaking. And what an astounding scenic feast awaited my eyes. The glow of the early sunrise bathing over beautiful snow-capped mountain peaks of all shapes and sizes stretching out forever. And the culmination of it – Mont Blanc rising majestically above them in all its glorious purity. So wondrous was the site that the pilot took us round twice over so we could drink in that vista. He took us as close as he could safely take us, so close that one felt one could almost touch the glorious mountain. It was a brief but exceptional experience never to be had again in all my flights over those Swiss mountains.

Thank you, Captain. I can still see Mont Blanc as it was that beautiful morning in May even as I write about it here, 43 years later.

In Geneva, I met Gunnel for the first time and we connected immediately. It was as though we had known each other forever. She and Einar were friends already, having worked together in Gothenburg, she as Head of Occupational Therapy and he as the Internal Medicine Specialist in charge of the Department of Rehabilitation. The three of us spent but little time on pleasantries and sat down together immediately to start our work on developing “Community Oriented Rehabilitation”. In this we were being very Swedish – time is too precious to be wasted.

We spent much time discussing the possible strategy that Einar had conceived and how it could be put on the ground. Then Einar would go off to attend to his other responsibilities in the unit while Gunnel and I actually started putting the ideas we had developed down on paper. Over the next few years we would be together in Geneva like this may be a couple of times a year, sharing our field experiences and our real-life learning. Using that to improve our materials and setting ever higher our goals aimed at a better life for disabled people.

And then to go away again to carry out more evaluation and gain more learning.

Community-Based Rehabilitation or CBR

During one such discussion in the early days we knew we had not got something quite right. “Orienting” rehabilitation to communities does not go quite far enough, we agreed. What we were discussing was something far deeper, penetrating the communities in which disabled people lived, promoting ownership of the rehabilitation process by those community members and disabled people together. For we knew from our own experiences and discussions with others that change would come only with ownership of, and responsibility for, the process of change.

Then Eureka! We got it right. Rehabilitation must be based in the Community we exclaimed almost together. It must be part of the fabric of each community. What we are talking about is Community-Based Rehabilitation. And so the term was born. Einar immediately went further. Ever the innovator, “We can shorten it to CBR,” he said.

And that is how the world came to know it – CBR, at that time as it does today.

The use of the word “based” had also another very important implication. We knew that all rehabilitation tasks could not be carried out at the community level. Support from outside would no doubt be required to assist them to solve those problems that they could not solve by themselves. The term CBR implied that a supporting structure was called for.

Einar

Einar had come to take up his post at WHO some four years earlier. His high level of intellect and intensively scientific mind is combined with an unlimited visionary outlook. All of which makes him a truly unique individual. For disability globally he was the right man at the right time at the right job. His concern was for the poor and the needy, the vulnerable, the marginalised, the neglected.

And that concern knew no bounds. Son of a Swedish Bishop, he grew up when poverty was the norm in Sweden. Before the Swedes discovered the value of the abundance of trees that nature had blessed their land with. He told me how he would see individuals rummaging in garbage bins where he grew up in Stockholm in the same way he saw people now in the poorer countries that he visited.

He was a sensitive individual. It was no surprise that he made it his first priority when he came to WHO to address the issues related to disabled people in developing countries. Issues of discrimination, disregard and destitution.

To understand these issues deeply, he selected a few countries to visit. Important to him was to reach rural areas where those most in need lived, to talk with them and their family members and others who lived in their neighbourhood. This gave him an understanding of how such people dealt with their problems and took steps to overcome them in the here and now. Because these people just had to. Life would have not been possible had they not.

One such country he chose to visit was in the Middle East. A recent disaster was created when poisoned cooking oil had been consumed by a significant section of the population. Many people, including a large number of children, had been paralysed by the poison. Various parts of their body had been affected. As a result, some had been unable to walk, others to move their legs or trunks, still others to use their arms. Einar was struck by the resilience of these people whose lives had been shattered by the cooking oil. The disaster impacted heavily on the severe financial and other difficulties most faced. It impacted on their day to day living and on their quality of life.

And yet these people had, to a large extent, reduced this impact by overcoming the effects the poison had on their bodies. Spending time with these people, Einar saw how mothers had made bars in their garden using branches of trees so that their children could hold onto them, use their legs to make them stronger and be able to walk again. He saw adults using suitably-shaped tree branches as crutches to enable them to walk and attend to farming. He talked with others who had been unable to move about make simple trolleys on which they could get to where they wanted, even involving themselves in trading.

In other countries he visited he met people who were deaf communicating with neighbours and others in their villages using simple signs which they had developed themselves. He saw blind people moving around the neighbourhood with a stick to guide them so that they were not isolated at home.

These visits constituted valuable learning for Einar. The learning converted into a seed from which grew the strategy that the world came to know and practice as Community-Based Rehabilitation or CBR.

Putting Learning into Practice and the Role of SIDA

Now he had to put the ideas he derived from the learning he acquired to WHO and get approval for action. Protocol required that he prepare an analysis of the situation of disabled people in developing countries to justify the recommendations he would make to WHO for a policy change. Preparing the policy document was a long process.

It was ultimately approved by WHO in 1978. The new policy direction was at that time called “Disability Prevention and Rehabilitation”. Later the programme name was changed to “Rehabilitation”.

Once approval was obtained, Einar had to seek extra budgetary funding to set in motion the beginnings of policy implementation. The Swedish International Development Agency or SIDA was particularly partial to the less fortunate in this world. The WHO’s new policy direction was attractive to them and they came to be a partner of the rehabilitation programme for the next decade or so. It is thanks to SIDA that Community-Based Rehabilitation was developed globally benefiting so many disabled people and their families throughout the developing world.

And it is also thanks to SIDA that Einar, Gunnel and I were now together in Geneva working on the CBR strategy and drafting a Manual that would start putting this policy into action. Then having done this, we would evaluate the practice of these in the field. Development of the CBR strategy with the Manual and its evaluation took until 1989. The Manual called “Training in the Community for People with Disabilities” became an official WHO publication that year. It was said by WHO some years ago that this Manual had been translated into over sixty languages and used in over 100 countries.

First Tasks

Carrying out these first tasks in Geneva in 1979 was no easy job. Drafting a Manual was arduous and exhausting. The first step was involving as many people as was practically possible and with them, collecting information. For this the assistance provided by a volunteer was invaluable. She had space in our room, joined us at our desk and sent off letters to as many sources as she could contact in any and every part of the world to seek their views on a possible strategy and its implementation.

Then she collated and tabulated the replies she received. Helen was from Australia. Her husband, a medical specialist was on contract to WHO for two years. Helen, herself a medical specialist but with no formal job had time on her hands, some of which she spent willingly with us.

As for Gunnel and me, one of our earliest tasks was to go round the “House” as the headquarters was often referred to. We met divisional heads and other officials in those departments that were relevant to disability and to what we were doing. These included for example mental health, accident prevention, blindness and deafness prevention, nursing, medical education and so on.

The response of most was seldom a positive or an encouraging one. Many were frankly discouraging. Some indicating that the idea of introducing rehabilitation strategies at community level was sheer madness. Which had Gunnel and I sometimes return to our room, close the door and shed buckets of tears. What were these people telling us? Did they not understand, not care? Where were we going?

Together we shared a strong belief with Einar that this was definitely the way to go and with this shared belief we overcame all obstacles. I recall one outstanding personality who gave us his wholehearted support from the word go. He was Jean Jacques Gilbert or JJ, a specialist in Medical Education and Head of that Department. He had done pioneering work in objectives-based teaching and evaluation of learning and was continuing to develop materials for medical education on these lines.

Einar and he shared a relationship based on mutual respect; each had an independent spirit and confidence in what the other was doing. Gunnel and I believed that what brought them together also was the antipathy to them shown by other professionals in the House. We believed also that the antipathy was a result of some envy of the intellectual and visionary capacity and the pioneering spirit demonstrated by both JJ and Einar.

Gunnel and I also grew a relationship of mutual respect with JJ. Over the next few years on our many stints in Geneva, Gunnel and I often turned to him for advice when we were stuck. The materials we developed were for self-learning, objectives-based and facilitated self-evaluation. So JJ’s advice was invaluable.

For me from Sri Lanka, his manner was sometimes embarrassing. Being a Frenchman and a gallant one at that, he would insist on greeting me by raising my hand to kiss the back of it with a bow, a real old-fashioned French style of greeting. This happened even when we met on a corridor. Strangely enough he never did that with Gunnel and that made me wonder, why not?

Gunnel and I experienced interactions within the House that resulted in both highs and lows for us. Neither of us liked the atmosphere that prevailed within it at that time, perhaps because we were women consultants, a relative rarity. But we loved our work and nothing could keep us away from that House.

Gathering More Information to Complete a Draft

Our initial work of gathering views and recommendations extended beyond the House to other institutions in Geneva. These included ILO, the International Labour Organisation, where we met Mr. Brown, a chubby, pleasant individual from England. He was supportive of our work from the time we told him of it. He cooperated with us to develop the strategy and evaluated those sections that were relevant to work, particularly the module on income generation.

Mr. Brown was responsible for having ILO formally recognised as a co-producer of the draft Manual with the ILO logo alongside that of WHO on the cover. So did UNDP, UNICEF and UNESCO have their logos on the cover.

Gunnel and I also visited UNESCO in Paris to meet Lena Saleh from Jordan. Lena was the single worker in the Special Education Section as it was then called, fighting a lone battle to improve the education of disabled children. The way she fought this battle alone was by producing booklets and other material for distribution and use in developing countries. One person alone in Paris reaching and impacting the right to education of many thousands of children and their teachers who were far away. Einar and Lena were good friends, their common approach to work bringing them together.

The Manual “Training in the Community for People with Disabilities”: Knowledge is Power

The WHO Manual “Training in the Community for People with Disabilities” or TCPD contains knowledge, and Knowledge is Power. This is the overall, the primary purpose of the Manual. That disabled people, their families and their communities will have power; power in their own hands to change their situations. Today we call this empowerment. That word empowerment was not used then, but here was the concept of empowerment in practice.

In the absence of knowledge together with the power to use it and to know how to use it, no change is possible. The overall design and content of the Manual has therefore a dual role: one, how to change their situation which was called the CBR strategy, and two, the CBR technology. The technology was actions made possible with knowledge and skills. The Manual has also built into it a monitoring and evaluation system to check that both are working.

A term that was not used at the time the Manual was first drafted, was community mobilisation. But this process of community mobilisation is the foundation of CBR. It is described in the Manual as including the following: bringing members of a community together, enabling them to talk about any problems within their group related to disability, discussing the resources they themselves had to deal with such problems and what more they may need, making available to them the knowledge and skills they need to do these, providing them with the support they needed and making all this sustainable.

In a nutshell, this is the CBR process. The Manual was not designed for professionals. It was essentially for CBR implementation within rural communities. With some adaptations it was also used in urban communities