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

Barbara McNamee was from Jamaica. She became my friend when we met in the month of October in 1958 as student nurses at the Royal Orthopaedic Hospital (ROH) in Birmingham, England. I have shared memories of our time together then in an earlier part of this memoir. We had been together for five years and three months. Mahin and Lyda both from Iran, then Persia were also with us.

The four of us became good friends during our first few days at the ROH. And we have remained close friends since then. In those first months, two calypso songs were particularly popular in the UK. They had just been released by the singer Harry Belafonte and were both about Jamaica. I enjoyed singing these to Barbara, especially when I saw that she was feeling a little low. One, “Island In The Sun” I mentioned a little earlier in this section. You may have heard the other “Jamaican Farewell”. They are available on YouTube. I occasionally send these to Barbara on WhatsApp just to remind her of the old days.

Barbara met Mike Rogers while she was at the ROH and he was a post-grad student at the University of Birmingham. They married soon after we completed our physiotherapy education. They had two children and spent the larger part of their lives in England.

Mahin left Iran much later to live in the USA and is now in Canada. She first had an Iranian husband and then an Egyptian one. Three stepsons living also in Toronto look out for her. Lyda also married an Englishman, Lewin Harris, and settled down in England. She passed on a few years ago. Barbara, Mahin and I still communicate regularly.

We last met five years ago. Mahin and I spent two weeks with Barbara in her home in Surrey, just outside London. Spent most of the time reminiscing with Barbara driving us around the picturesque Surrey countryside. Together with memorable meals in several old English Pubs. Much to the amusement of the other two, I always went for the Fish and Chips.

Following up in St. Lucia

There was every reason to believe that within this brief period CBR (Community Based Rehabilitation) had been well-established in St. Lucia. The country had plans to expand this programme.

One was able to reach the conclusion that the Manual had been an effective tool used by disabled people, their families and the Community Health Assistants. CHAs with a basic training of three months for their Primary Health Care work could with a further training of at least 12 days in a workshop situation and a further three weeks of field training and with regular and adequate support from a higher level carry out their rehabilitation tasks with disabled people successfully. The availability of second level support enhanced quality and coverage.

The Community Health Nursing Service or CHNS, recognising the value of the inputs from the two physiotherapists from the Victoria Hospital, intended to request the Ministry of Health for one of these therapists to be released to the CHNS. The CHNS was continuing its dialogue with the education sector to promote the inclusion of disabled children in local schools. They had started a conversation with employers regarding job opportunities for disabled youth and adults. And an information campaign to increase public participation in what was now a programme and no more a project.

I left St. Lucia confident that disabled people here had hope for the future.

Marcella Niles

But I cannot leave St. Lucia before including Marcella Niles in my story. The Community Health Nursing Service was her responsibility. As my counterpart she went everywhere with me. In Castries she drove me around herself in her own car. To go out of Castries we had access to a larger vehicle from the CHNS but often driven by Miss Niles herself. Marcella Niles was very proud of her island and quite rightly so.

She guided me to the most beautiful parts of St. Lucia. She would, whenever she could, take me through the town of Soufriere so that I could see the Pitons. And she always pointed them out to me – Big Piton and Small Piton, two tall volcanic spurs rising straight up from the sea, adjoining the coast. They were linked by some sort of a ridge.

On a few occasions when we had time to spare, she took me to see tropical rain forests which St. Lucia is well-known for. We in Sri Lanka have our own famous rain forest Sinharaja, which is a World Heritage Site. But these in St. Lucia were somehow different. Maybe had I gone deeper into our Sinharaja I would have found a similarity. In addition to the giant ferns and lush greenery, it was very, very wet all the time – as if a very slight rain was constantly falling. It was surprising that one could also see scrub forests in some parts of this small island.

For my stay in St. Lucia Marcella had found me accommodation in an Apartment Hotel, quite common in the Caribbean. This suited me well. It had a pool which none of the other residents appeared to use. So I had it to myself every evening after work.

After relaxing in the water, I would walk to the little shop at the bend in the road, not far down from me. There I would find something to cook for myself to eat with rice for the evening meal. May be some mixed vegetables or some fish. Whatever it was, it was tasty, cooked with St. Lucian curry powder. And always a luscious mango to follow. However good that mango was, it could not touch our delicious Jaffna mangoes for taste.

A Meeting in Sri Lanka

Before I move on from this phase of my journey in South America and the Caribbean, there was a meeting I must stop for. It was one I was called upon to organise – the WHO Interregional Consultation on CBR held in Colombo in June 1982.

WHO Interregional Consultation on CBR, 1982

It was almost three years since we had started work in the field. We felt the time was ripe to get the people who have been testing the Manual together to share experiences. Einar suggested that I organise the meeting in Colombo. Sri Lanka had also been participating in the field trial.

I was extremely fortunate and overjoyed to welcome to my own country so many friends I had made on my travels to their countries. Dr. Hindley-Smith asked for my help to organise a tour to places of historical interest and to the game parks. Others toured independently after the meeting was over. My country was, after all, a tourist attraction. And although I say it myself – it is beautiful.

When I had been in Jamaica, it had reminded me much of my own country. So much so that I had this in my thoughts. If ever, if ever I had to leave my motherland for some reason or another, I would settle down in Jamaica. That too was beautiful, particularly the northwest where I was, away from the tourist hot spot of Montego Bay. Not just the beaches and scenery, but more importantly, its people.

During our meeting Einar and Gunnel were guests in our home. This was not just enjoyable but also useful to have more time to spend in discussion and planning the next steps. For our meeting, 22 participants came together from all parts of the globe. Countries that had carried out field tests were Botswana, Burma, India (Kerala State), Mexico, Nigeria, Pakistan, Philippines, St. Lucia and Sri Lanka. There were also others who were invited as representatives of WHO, other UN organisations and NGOs and some as individuals.

After an exchange of experiences from these countries, they spent much time giving their suggestions in detail as to what revisions should be made in the WHO Manual. These were taken into account when the Manual was revised the following year. CBR had been born.

Back to Asia – Malaysia

My First Contact with Malaysia

The first time I went to Malaysia was in 1983 to represent WHO at the Seventh Asia & Pacific Conference of Rehabilitation International, known globally as RI. It was founded in 1922 as an organisation that led discussion on issues related to disability at a global level. The climax of its work was a World Congress held every four years. On my stopover in Mexico, I referred to Dr. Hindley-Smith telling me about his participation at the RI Congress in Ireland in 1969. It brought about the realisation in him of the extent of neglect of disabled people in developing countries.

At that Congress, RI was promoting new thinking on personnel required for rehabilitation. It was looking at disability as a charity-based concept. In the 1980s it was promoting interventions for people with disability to improve their quality of life in a social context. Then, early in this millennium when the UN Convention on the Rights of Persons with Disabilities had been approved, their interest evolved to the promotion of disability rights.

Correspondingly, CBR had been accepted by the World Health Assembly. Increasingly now, more countries were adopting this approach both for policy and implementation. My own CBR story is about the small part I played travelling from country to country assisting them to start putting policy into practice. Just planting a seed as it were. How that seed would germinate and into what kind of tree it would grow was left to be seen. But germinate it did and by the time I got to Malaysia I was amazed at the way CBR was maturing.

It was blending with the particular ethos of each country to meet the needs of its disabled people.Seventh Asia & Pacific Conference of Rehabilitation International, Kuala Lumpur, 1983 RI (Rehabilitation International), the world body had some regional branches. Every two years RI organised a meeting in one of its regions. This first one I was invited to was in the Asia Pacific Region.

I was a speaker at a Plenary Session on the second day of the conference. The speaker before me was Dr. Siti Hasmah binti Haji Mohamad Ali, wife of the Prime Minister of Malaysia who we know as Mahathir Mohamed.

The topic of her presentation was a rather general one, focusing on the family as a vital provider of care. I had an opportunity of speaking with her in the break that followed the panel discussions. She told me her particular interest at that time was improvement in the situation of rural women.

That is why she had agreed to participate at this conference. She felt the discussion we had would help to promote her cause. I learned later that she and her husband had met at Medical School. They had been married soon after they left university.

I had been invited to present a paper on “CBR as a Relevant Approach for Developing Countries’. I included in the paper my thoughts on why a new approach was necessary with data from Sri Lanka. I also included a précis of the approach with examples, that WHO had adopted assisting countries to develop and of how it had impacted the quality of life of individuals and families; and a few results with statistical data from three countries – Botswana, Mexico and Sri Lanka, in three continents; and mention of its relationship to Primary Health Care, which at that time provided an entry point with the infrastructure.

My conclusions were that, “The results to date indicate emphatically that the approach is suited to the needs of developing countries… The quality of results cannot be questioned – for where better to provide freedom of mobility, create independence in daily life activities and enable disabled people to participate in the mainstream of community life than in the environment of their own communities?”

“The integration of disabled children in existing local schools and the provision of income generating opportunities within their own communities has ensured for disabled people full participation with true integration, starting with the family. It has done away with the need for them to be transported to a new and strange environment to be rehabilitated”.

Is CBR a Medical Model?

These results above are those that critics argued made CBR a “Medical Model” propagated by WHO. Some said this was because CBR was concerned also with functional independence. I say that maximal functional independence is an indication of an individual’s health status, beyond a medical condition. Improvement in the health of an individual is a human right. Besides, even an individual’s functional independence is not possible without social change in the community the individual lives in.

My own finding and therefore my argument was that participation in community life be it educational, functional or economic, cannot happen without a change in community attitudes. And with that an acceptance of disabled people on the basis of equality. An approach that was at this time being called “the Social Model”. CBR, based on the responsibility of the community, brought about a social change.

But I also saw CBR go beyond a purely social foundation; it also extended to enabling disabled people enjoy the same opportunities and responsibilities as others in their communities, an approach that is now called “the Human Rights Model”.

The world of disability did not use the words “human rights” at that time. But this was CBR’s needs-based approach, enabling equality in all matters including human rights. What is important is that CBR was not, for instance an individual-based, service-based approach reaching out from centres in districts or elsewhere. In these instances, responsibility lay with those centres, not with the communities in which disabled people lived.

Introducing CBR to Malaysia

It was against this background that the Government of Malaysia requested WHO cooperation to initiate CBR. In response, WHO sent me there for three months from February to May 1994. The mandate for matters related to disability lay with the Ministry of Social Welfare.

Initial discussions were with the Secretary of this Ministry. We talked about what he expected from me and about how I would set about the task he had set me. I said that WHO’s advice to countries was that the Manual, “Training in the Community for People with Disabilities”, be used as a tool for empowering disabled people and families with the knowledge and skills they required to start any change. I said without this tool for empowerment translated into Bahasa Malaysia CBR would be difficult for me to initiate in three months.

The Secretary called together ten members of his senior office staff. He removed the cord that held the different modules of the Manual together and separated the modules into ten lots. Giving one lot to each of his staff he said, “Could you please translate these and let me have them back by Monday?” Typed and photocopied, a sufficient number of Manuals were available to us when we required them. Such was the dynamism of this man who led the Ministry of Social Welfare at that time. I thought to myself, with this leadership anything should be possible.

So far, in other countries I had introduced CBR at the grass roots, promoting the development of a system upwards to support it. The structure for CBR was as yet incomplete in those countries, because appropriate mid-level personnel were lacking. This was a serious constraint for ensuring effectiveness as well as for sustainability.

Here in Malaysia for the first time, I was introducing CBR within a support system which had responsibility for disability – the Social Welfare Ministry. The Ministry had Social Welfare Assistants or SWAs at district level. To support them were Social Welfare Officers or SWOs at state level. Among them would be mid-level workers. They required relevant knowledge and skills in CBR. They required also to have this task included in their job descriptions. Then the focal points for a CBR system would be in place at the two support levels.

It would be up to officials at these levels to build the horizontal linkages within and outside government at each level that would together provide communities with the support they required. In development jargon this was called multi-sectoral collaboration. In reality, it sometimes worked in bits and pieces, often it did not. Much work was required here globally.

Local Accommodation

During the three months that I spent in Malaysia I was to work in Batu Rakit in the State of Terengganu on the east coast. Batu Rakit was a “Mukim” or sub district just over a half-hour drive from Kuala Terengganu, the capital of the state.

Our teaching area was rural. It was a quiet fishing village with the appearance of serenity and tranquillity. I was fortunate to be given accommodation here in a kind of rest house run by the state. This was a simple building set in a large property scattered with very tall coconut trees. There were a few rooms and some common bathrooms and toilets. The female participants from other states were accommodated in this rest house with me. Other participants found lodging in homes in the area. Evening meals to all were provided at the rest house. Because of this the group found much time to get to know each other and to talk about areas of common interest including work.

I liked very much the local food that was served. It was simple. “Nasi” means rice which is the staple in every meal. Here it was white rice served with Malaysian “curry”. Curries were in no way like ours, but this is what the dishes were called in English.

They were cooked with what we may call a raw curry powder – turmeric, coriander, cumin, cardamom, cloves, cinnamon and ginger, with such condiments added in different proportions. As a result of these particular condiments, the taste was subtle quite unlike ours which tends to be spicy, even our white curries.

The rice was served with many different vegetables, and always fish from the village. My favourite Malaysian dish was nasi dagang. For special Malaysian dishes such as these, the rice is cooked in coconut milk, and it turns out rather like our milk rice or “kiributh”. Except that it is flavoured with pandan leaf or “rampe”.

The tastiest nasi dagang I had was served in the Hotel in Kuala Terengganu where I stayed for a few days before moving to Batu Rakit. It was served with fried sprats, shrimp sambol, a boiled egg and cucumber. What we eat as nasi lemak in Colombo or even the food in Kuala Lumpur is nothing like the Malaysian food I ate in Kuala Terengganu. There, food was very tasty with the subtle flavours of the food itself.

In Colombo I now eat Malaysian food with a rather spicy chicken curry, adapted to suit the local palate. In all my later visits to Kuala Lumpur staying in international hotels as I did, I was not able to find the original Malaysian food that I had enjoyed in the rest house in Batu Rakit.