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

When my memories come back to Sri Lanka they call out urgently, “Remember first the Psychosocial Project!” For the PSP was unique. It was implemented during the long conflict for our people affected by it in the northern and eastern parts of our country. Led by Gameela Samarasinghe and Ananda Galapatti with Harini Amarasuriya, Kusala Wettasinghe and others.

Later, but still also during the conflict, with some of these and other committed psychosocial workers memories of meeting needs this time of our “Ranaviru” or disabled soldiers. This was with the Ranaviru Seva Authority, RVSA, under the chairmanship of Dr. Narme Wickramasinghe with the able assistance of Dr. Visakha Dissanayake. The RVSA worked in the areas where our armed forces came from.

Within both the PSP and the RVSA I had the privilege of being invited to work with our psychosocial workers to see to the disability needs of civilians in the first project and of members of our armed forces in the second with whom they interacted. Those were difficult times for our people, but as always, our young professionals stepped forward to serve their fellow country women and men.

Introducing Community-based Rehabilitation to the NGO Sector in Sri Lanka

To continue with memories of my journey, I have to go back now to the year 1979 and the month of August, when I returned home after my first assignment for the WHO in Geneva. Whilst I was carrying out my task participating with so many others in the global development of the concept, strategy and technology of CBR (Community Based Rehabilitation), my thoughts were constantly of how these would fit so well in Sri Lanka to benefit our disabled people.

So, no sooner I returned to Colombo, I made an appointment to meet the Deputy Leader of the NGO Sarvodaya, which in Sri Lanka has been the most well-known NGO in community development. The work of Sarvodaya was based on social mobilisation, just as CBR is. I had come to know Mrs. Sita Rajasooriya when she was a Commissioner in the Girl Guide Movement and I was a teenage girl guide.

Over a chat about what I had been doing in Geneva, I gave her a copy of the WHO Manual and asked her whether she would look at it. She called me a year or so later to tell me that Sarvodaya was implementing a CBR Project in the district of Kalutara in the Western province. I have been there and elsewhere with Sarvodaya several times, visiting with them their people in their homes.

Over the next several years, other NGOs called on me to help them start implementing CBR in many parts of Sri Lanka – Fridsro in Kandy in the Central province, Navajeevana in Tangalle in the Southern province and SEED (Social, Economic and Educational Developers) in Vavuniya in the Northern province were some of the larger ones. All the projects had funding partnerships with outside donors. With evidence of visible and measurable impact, projects grew. In the long-term however potential growth was sometimes stunted by limited funding.

I shall come back to Fridsro later and its relationship with Government CBR programmes under the leadership of Gihan Galekotuwa. Fridsro sans Gihan Galekotuwa has now had to fade out of the realm of disability due to unavailability of sponsorship.

Sarvodaya, Navajeevana and SEED led respectively by Dr. A.T. Ariyaratne, and later his son Vinya, the late Kumarini Wikramasuriya and Ponnambalam Narasingham, together with many other NGOs continue their work in disability promoting CBR. The last of the three named above gave his formal name reluctantly when I asked him just now on the telephone, emphasising that he preferred being called “Singham”. This is what I had always known him by.

Time spent with these organisations so long ago are among my most memorable. With SEED it was focused on teaching their staff. SEED had been within sight of the conflict. We used for teaching the top floor of their three-storey building with a roof made of green metal sheets. Made the room very, very warm. But the breeze that wafted through its open sides compensated somewhat.

Here we had some of the most participatory of my teaching sessions in Sri Lanka. SEED staff were active, interested, motivated. Both the heat generated in the atmosphere and that in debate called for frequent ice breakers. These were innovative and enjoyable. But mostly I sat out, needing for myself a mental and physical break from all that dynamism around me.

The only hotel in Vavuniya was filled to capacity with families from the North fleeing the conflict. I stayed there only once. Having to jump over a smelly open sewer made so by disrepair to get into the hotel was off-putting. The disrepair extended to the inside of the hotel because such was the time. Compensating for this the management was concerned and kind, and had found for me a small room with many stairs to climb to get to it. I had all my meals here in my room because there was no other place for it. It was simply furnished with a bed, desk and chair.

There was no kitchen either and the hotel bought me my food from outside. An upset tummy on a few occasions indicated to me that I should find other lodgings next time. So on my following visits, SEED found for me a convent to stay at. Here, living with nuns, I felt cherished. I was their first paying guest. They were truly beautiful with their warmth and their empathy.

Other Experiences with NGOs

Many years later, and still during the long conflict, I was back North again twice on my journey. The first time I was in Jaffna. It was with Save the Children Fund (SCF), UK. They sent me so I could advise them how they could include actions for disabled children within their Northern programme.

Much of Jaffna district at the time was under the control of the Tamil Tigers. SCF had to obtain special permission for me to come to Jaffna, which, it turned out, they did quite easily. I believe it was easy because someone had got my name wrong. On the letter granting permission it was written “Pathmini”, the way it is in Tamil. I was given permission to travel anywhere I needed. I was not even stopped at checkpoints. Everywhere I went, it seemed as though I was expected.

The next work assignment in the North at this time included coming back to Vavuniya. I was here with Hameed of UNICEF as part of a series of teaching assignments I did to introduce to district and divisional officials issues related to disability in children. And to discuss with them how they may deal with such issues during the course of their work, so attempting to include childhood disability in development strategies during this time of conflict.

The series also covered Puttalam, Mannar and Trincomalee, stretching out across our island. As far as I know, those workshops were never followed up. I hope the seed had been planted in many an interested mind and would have taken root in some. It was a difficult time for all.

Before my memories of the NGO sector move on, there is another that asks for recall. Save the Children Fund, UK showed much concern for disabled children, making their work inclusive to the extent possible. With that in mind, they had me develop for them in partnership with teachers, parents, children and others, “A Guide for Preschool Teachers”. SCF had it published in all three languages and it was widely used, especially in CBR. It helped bring into the preschool mainstream many young children at an early age. This was a task that gave me much satisfaction.

This was soon after the Tsunami of 2006. Looking back, it is clear that activities of the International NGOs at this time was at a peak. Sri Lanka was the beneficiary of generous help from a caring world.

How CBR came to be in government

Dudley Dissanayake was the Director of the School of Social Work managed by the Department of Social Services. This was located on Bagatalle Road in a two-storied house. Rent was paid for by Government. One day I received a call from Dudley asking if we could meet. We met the next day. He told me about the reason for his call.

He said that quite recently he had found in the back seat of the pick-up truck that he drove, a photocopy of a book. He did not know how it had got there, but his staff shared the use of the pick-up truck. They used this also to transport students for official tasks.

The book had been made by WHO and was about disabled people. It had my name on the cover along with two others. Dudley wanted to know what it was about. I was of course only too happy to share with him the work I was doing in Geneva with my colleagues Gunnel Nelson and Einar Helander and with innumerable others spread throughout many countries.

This was now 1981 which the UN had declared as the “International Year of the Disabled”. It was customary for the UN to do such things on subjects that they felt required the attention of member states. To mark its significance, Dudley felt that students of social work should have an exposure with disabled people and disability. We discussed how this could be done.

The result was that two students expressed their wish to carry out their final year project study testing the usefulness of the Manual in Sri Lanka. Dudley asked me if I could help them, and I believe I was fortunate to be able to do so. I said that first I would have the Manual translated into Sinhala.

For this purpose, I obtained the willing help of two physiotherapists, formerly favourite students. By name Wettimuny Silva and Somadasa Mohettige. While they did the translation in their own homes in the evenings after work, we met at my dining table in my home in Swarna Road for joint sessions which, as you can imagine, were called for quite often. We had the Sinhala Manual ready in no time. Wetta and Some, as their friends called them, and I maintain the bond we established at that time and continue our friendship.

First Field Tests in Sri Lanka

Dudley had the necessary photocopies made. I was soon walking the two villages of Meegolla and Kahandawelipotha in the Kurunegala district with the two students of social work. They had selected between them 20 children who had disability all under the age of 14 years. At the end of the six months of the project, 19 of the 20 showed improvements. Some of those children still live vividly in my memory.

One was Mala, aged eight years, who had cerebral palsy. Her mother cared for her with utmost love. She bathed, dressed and fed Mala in the morning and sat her on a chair at a window. Mala spent her day watching passers-by on the road.

That was until the two students of social work came into their lives. Soon Mala was learning to walk using bars her father made in the garden using long bamboos. She was helping her mother in the kitchen. Children from the neighbourhood came to her house to play with her. Hopefully in a few months she would go to the village school. The students arranged for the local social service worker to come to see Mala. The social service worker will get a wheelchair for Mala.

Another was 11-year-old Nandani. She too did not go to school. Her parents could not see how she could do that, seeing she could not speak. But she could hear. Like Ntchadi in faraway Serowe in Botswana, she too looked on longingly when her young siblings went to school. Counselling from the students, an appointment with the principal and the education officer and Nandani was in school.

When we visited the school before the project ended, Nandani was already showing signs of leadership in the classroom. She was a bright girl. She will surely catch up with her peers before long.

Dudley shared with UNICEF Colombo the study and the results of the work of the students. He was able to secure from UNICEF formal support for the development of CBR as project studies for a number of his students over the next few years. But within three years UNICEF, with the Department of Social Work and the help of students, started a large CBR project in Anuradhapura district.

In time Dudley, climbing the administrative ladder step by step reached the Ministry of Social Welfare. It was first as Senior Assistant Secretary, then as Additional Secretary, and finally reached the peak as Secretary of the Ministry. Dudley took CBR there with him. Dudley had the Manual translated into Tamil and introduced its extended use in the North. From then on CBR grew within Government with generous allocations directly from the national budget.

Disability Studies Unit – Early Years in Sri Lanka

I shared with you in the section above how the University of Kelaniya, in 1993 with support from Sweden, set up the Disability Studies Unit or DSU and of my role in it. I also continued in that section to share with you my journey in disability during my time there, focusing on aspects of international work. This is a suitable time perhaps to reflect on my journey with the DSU in Sri Lanka.

It was Anoja Wijeyesekera, at the time a Programme Officer at UNICEF Colombo who introduced the DSU to the Ministry of Social Welfare. Viji Jegarasasingham was the Additional Secretary at the time. Mrs. J. was one dynamic lady with a mission. That mission was to ensure the effective functioning of her ministry and other institutions under her purview. She was later promoted as Secretary and held that post for many years until her retirement from Government service.

Viji Jegarajasingham, our Mrs J., set up within the Ministry a Resource Group on CBR with just five of us as members. One of them was Gihan Galekotuwa or Gale who was then the Disability Programme Head at the NGO Fridsro. Our Resource Group strengthened the relationship in disability work between this ministry and that of health and of employment. This was with the aim of planting the seed of multi-sectoral cooperation to benefit disabled people with a wider perspective of their rights.

Gale was convinced that CBR was the way to go if the rights of disabled children and adults were to be fulfilled with their inclusion and participation in their communities and in society at large. Fridsro had developed their CBR capacity by implementing CBR themselves in parts of the Central Province where they were located. Starting in Poojapitya Division and spreading to 11 others in the Kandy district. These were developed as learning and teaching areas.

Gale soon had Fridsro draw up an MOU with the Ministry of Social Welfare to provide technical and other support to the Ministry to improve their CBR programme both in quality and in coverage. This agreement and action continued for many years, even after I was no longer at the DSU.

Within a few years many disabled children and adults spread out in most of Sri Lanka’s districts had been reached. A change was being brought about in their lives, families and communities. Monitored continuously and evaluated at intervals by Fridsro.

Working with me at the DSU was Somadasa Kodikara, a former student of mine at the School of Physiotherapy. Representing the DSU “Kodi” and I worked with the Ministry and with Fridsro as a threesome to reach disabled people in more than 50% of Sri Lanka’s districts during those few years. The DSU had roles in both teaching and in monitoring. We soon learned that Sri Lanka government workers were loath to submit written reports. As for us, we were happy monitoring through field visits. For us it was any excuse to go to the people.

During our years together at the DSU, Kodi and I continued to evaluate the WHO Manual in the two languages with periodic revisions and continuous improvement. Fridsro provided financial support for publishing them in both languages for field use. Kodi and I also produced and published through the DSU much teaching-learning material for both community workers and for their divisional and district supervisors.

Soon after the DSU was born, we were invited to link up with the Global Disability Database maintained jointly by Uppsala University and AHRTAG in London. Before I left the DSU in 1998, we had an agreement drawn up with the International Health Unit of London University and the Hospital for Children, Great Ormond Street to start the Education of Speech and Language Therapists or SLTs.

. The DSU has come a long way. And it will continue its own journey as it grows unendingly.