Some remarkable Japanese CBR workers

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

The work done by the Disability Studies Unit (DSU) in Sri Lanka I have chronicled with my memories at home in Sri Lanka in a later section. Here let me recall but one other outstanding contribution that the DSU made at that time to the pursuit of disability studies and its practice. Through an agreement signed with the Child Health Unit of the University of London and the Great Ormond Street Hospital, London, a course for the education of Speech and Language Therapists (SLTs) was pioneered in 1998.

Since we had just one SLT at the time, we arranged for the London counterparts to send us six SLT teachers a year, each for one month for a period of six years, until some of ours could take over teaching functions. They also sent us Mary Wickenden as a full-time course coordinator for three years. Kelaniya University would establish relevant posts in the DSU by this time. What started as a diploma course became a degree course not much later. Soon those graduates were following masters degrees and then doing their doctoral degrees.

We started by selling our SLT course to the Ministry of Health for just six students at a cost of Rupees 90,000 per student per year. The ministry was required to establish a cadre and increase it annually. Private students were also enrolled. The DSU continued as a self-financing unit. When diplomas became degrees, I believe that initiative was no longer needed because the costs were met by the university.

The DSU is now a Department of Disability Studies or DDS with a large cadre of staff carrying out two degree courses. It has in the chair a Professor of Childhood Disability. A Disability Resource Centre to support disabled students and a Centre for Disability Research chaired by the Dean run alongside the DDS. The DDS is also the technical resource for the National Centre for the Rehabilitation of Children run by the University. It is called Ayathi.

Parting with satisfaction and fulfilment

I was sad to leave the DSU. Prof. Carlo Fonseka was no more the Dean. When leadership changes, so do policies. Disability was no longer viewed as a social issue and one of human rights. This was a Faculty of Medicine. It was made known to me that the responsibility for running the DSU would be taken over by a Senior Medical Teacher.

It was time for me to go. I left with a sense of satisfaction and fulfilment. I look back on that experience with an immense sense of joy. And of appreciation to the people of Sweden who made that possible. And then I continued on my journey in the World of Disability. This time with invitations also from the Japanese and the Norwegians.

Japan and Norway, major CBR supporters

Looking back, I wonder how I may, at this time of my life, share with you adequately my memories of all those other great individuals and organisations who contributed to the growth and development of Community Based Rehabilitation (CBR) and with whom I had a relationship in those early decades. All those people, those who lived with disability and those who did not, were concerned about improving the lot of a neglected, often oppressed section of our society. A few who I have not written about as yet come to mind. Of them, two press urgently on my memory. They are the Japanese and the Norwegians. Although I will spend some time with these two, that is not to say I have forgotten the many others. So before I go to those, let me share with you memories of Handicap International and of a personal experience in South Africa.

Handicap International

Handicap International, better known perhaps as HI, is one that brings back memories. They invited me to work in Nepal on many occasions to see the Nepalese on their way with CBR. I first met HI as a new-born in 1982 as Operation Handicap International or OHI. OHI had its headquarters in Lyon, France, not far from Geneva. Its co-founder, Jean-Baptiste Richardier, met us often at WHO and gave us valuable information and advice on appropriate assistive devices to include in the WHO Manual. And on other matters in general.

My relationship with HI was a long one though we did not meet frequently. It continued until much later, when they would call me in Colombo for briefings and discussions leading to work when needed. I hear that it is now called Humanity and Inclusion with branches in many countries. The name change was apparently to reflect that their work was no more confined to disabled people. It is also extended to other vulnerable groups. My, how it has grown in 40 years. Just wonderful.

South Africa, University of Witwatersrand and a Personal Experience

I cannot forget Marjorie Concha, a CBR pioneer in South Africa and Professor of Occupational Therapy at Witwatersrand University, Johannesburg, and her staff. Marj invited me over to meet with professionals in that part of the world and to visit a CBR project started by her department. Plans were first a three-day meeting with the professionals. Then a weekend at Krueger National Park with Marj and her husband Ettel, and thereafter on to CBR. The project was in Tintswalo in North Eastern Transvaal and adjoining the park.

This was a rare occasion on which Nalin had joined me. South Africa and Krueger wildlife could not be missed. But that was not to be.

At the end of the third day and with the end of the meeting, Nalin took ill. The hospital doctor instructed us to go to the Heart Hospital a few kilometres down the road (from our hotel). We found out later that this hospital was built for whites only during the apartheid regime. No expense had therefore been spared. It was the best that it could be. Thanks to the great Nelson Mandela, it was now open also to blacks, browns, the yellow-skinned and to all colours of the rainbow.

The Heart Hospital in Johannesburg

The warm and friendly young native African doctor who saw us was a cricket fan and knew well of our country. Sri Lanka was known all over the world not just for our tea, but also for our cricket. He talked of Arjuna, Murali and Aravinda. Sri Lankan Cricket was reason enough for his special concern.

Soon he told us that Nalin had had a heart attack. He arranged for Nalin to be admitted immediately. By this time it was nearly midnight but the Specialist came without delay. He told me the damage to the heart was extensive and severe. He had Nalin put on all the necessary life-saving machines. He said he would be back in the morning and carry out the required tests to make an accurate diagnosis.

He advised me to go back to the hotel and return at seven when he would be back. When I did go back in the morning, Nalin was in heart failure and in a coma. He remained in that state for the next four days. I was allowed to sit by his bedside all day. I had my meals in the hospital canteen. Nalin had a specialist nursing sister attending on him full-time, monitoring him closely. Each day would be written on his bed-head ticket, “Patient’s condition uncertain. Family informed.”

Back at the hotel on that first night there was much to be done. Communication by fax with the insurance people in London was a priority. But guess what? The insurance people informed the hospital that they would not meet our cost. We found out later that this was the reason – apparently Sri Lankans were notorious for travel insurance fraud. They would take out a travel insurance, go to a place like the UK, have pre-planned surgery and make costly insurance claims. So the London insurance people presumed we were one of the same breed. They refused our claim.

Fortunately, the owner of our insurance agency in Sri Lanka was Nihal Senaratne. Nihal came up trumps. He told the insurance people what the consequences of their refusal would be. All Nalin’s bills were settled. Otherwise that experience would at that time have cost us about USD 20,000. Such was the hospital. Such was the quality of care. Cheap in terms of the result.

Meanwhile my Lecture Tour was put an end to. But Marj and her staff did not end their relationship with me. They were in touch with me constantly through every day. I told them what I needed urgently was to get to a shopping centre. Two colleagues took me to one where I could buy for Nalin a couple of pairs of pyjamas. As a Sri Lankan, he wore only sarong at night. I was preparing for when he would come out of the coma. I knew he would recover. He had to. And then he had to have some smart pyjamas to walk around the hospital in.

Being with the Japanese

The Japanese came into CBR later, having first I suppose to look into their own disability situation. If I may name one individual who led the support for CBR in that amazing country, it was Yukiko Oka Nakanishi. She had lived with severe disability since the age of four years when she had polio. Yukiko’s empathy with people in the developing world who had disability themselves and for others of us who worked in the field of disability was infinite.

With her knowledge and commitment she earned the trust of JICA, the Japan International Cooperation Agency. She was one of its consultants and advisers it seems to me forever. JICA is the implementing agency of official Japanese development aid that supports socio-economic development and economic stability in developing countries. Influenced by Japan’s disabled people, JICA continued to push forward strategies to realise the full participation and equality of disabled persons globally.

Yukiko Oka Nakanishi

Yukiko was married to Shoji Nakanishi who also lived with very severe disability from a very young age. They are perfect partners, complementing each other’s work based on their life’s experiences before they met. And then continuing successfully to work towards changing the situation for others who had to face those same situations. She, through the Asia Disability Institute she set up. And Shoji, through the Human Care Association he founded.

Both promoted the Independent Living Movement (ILM). Shoji set up ILM through the Human Care Association. He took a leading role in it in his country, in the Asia-Pacific region and globally. Together, they harnessed the cooperation of many other fellow Japanese to change the situation of disabled people in their own country. And in other countries. And they continue to do so.

I had the good fortune to first meet Yukiko when she took up a post for three years at ESCAP, the Economic and Social Commission for Asia and the Pacific in Bangkok. Her task was, broadly speaking, to stimulate interest in disability issues in member countries of ESCAP and to discuss with them what they could do about it. Numerous meetings and workshops were held in Bangkok towards achieving this purpose and I was sometimes invited to share experiences of CBR at these events. ESCAP comes within the UN Economic and Social Commission headquartered in New York.

An Unusual Experience

I will illustrate how intensive CBR workshops generally were with a personal experience. I was the rapporteur at a multi-country workshop held in Khon Khaen city in north-eastern Thailand in 1990. Yukiko and her boss were working on the report with me. We worked long hours to get daily reports done. Then we had to get the final report ready by Friday morning so the participants could approve it.

We worked all night Thursday. We had it ready and photocopied. But it gave us time only for a quick shower and an even quicker breakfast so we could get to the workshop in time. The workshop ended by 1 p.m. for lunch. By 3 p.m. I was on a local flight to Bangkok with a direct connection to an international flight back home to Colombo.

Quite soon after boarding the flight to Colombo, I started feeling somewhat groggy. I held on for as long as I could, but decided finally to call a stewardess. Before I knew it, I found myself waking up flat-out on the aisle with a circle of worried faces peering down at me. I had collapsed.

When the flight landed, I was brought down in a wheelchair in the cargo lift. To be taken directly to the Medical Centre at the airport. When I said I was a diabetic, the good doctor gave me a glassful of glucose, quite sickening to drink and quite unnecessary I thought. I told her the reason for my collapse was fatigue. I was still unfit to walk, so the stewardess wheeled me out. Nalin was waiting to collect me. He nearly collapsed himself when he saw me being pushed out in a wheelchair.