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Disability studies established in Lanka, Nalin’s heart attack in Johannesburg

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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.



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The Division Bell Mystery

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Tales of Mystery and Suspense 3

The murder, in a private dining room in the house, is of a financier with whom the government was negotiating a loan. When this seemed difficult the Minister of Home Affairs agreed to lead discussions, since he had known Mr Oissel the financier when they were young. Hence the private dinner, but when the Minister stepped out for a vote, Oissel was shot just as the Division Bell rang.

The Brahms and Simon detective novels, the first of which I wrote about last week, were amongst several books by the pair that Robert Scoble gave me when I was in Australia towards the end of last year. Amongst them was another thriller of a very different sort, though that too was written and set between the wars.

Called The Division Bell Mystery, it was set in the House of Commons, the first such book I believe, and was by Ellen Wilkinson, a Labour MP who became Minister of Education in Attlee’s government after the war, having served previously as Parliamentary Private Secretary to several ministers. Her hero Robert West is also a PPS, but a conservative, and his Minister, of Home Affairs, is an old style aristocrat, not much loved by the less orthodox Prime Minister, who nevertheless needs his support on many occasions.

The murder, in a private dining room in the house, is of a financier with whom the government was negotiating a loan. When this seemed difficult the Minister of Home Affairs agreed to lead discussions, since he had known Mr Oissel the financier when they were young. Hence the private dinner, but when the Minister stepped out for a vote, Oissel was shot just as the Division Bell rang.

West was just outside the door when the shot was heard, and when he opened it saw only the dead body with a revolver beside it. The assumption that this was suicide was however challenged by Oissel’s grand-daughter Annette, who was his heir, on the grounds that he would never have killed himself. But her view was given greater credence by the Inspector put in charge of the case who said there were no burn marks on the body which would have been the case had Oissel fired the pistol himself.

Matters are complicated by the fact that Oissel’s flat had been burgled while he was at dinner, and Jenks the policeman allocated to him, who had served the Home Secretary and seemed more acceptable to Oissel than someone from the Security Service, had been killed. Matters get even more complicated when Annette says her grand-father’s notebook in which he wrote his secrets in cipher was missing.

That was found in Jenks’ pocket, and then a photographer came to West to say he had been asked by Jenks to photograph this. More worryingly for West, he finds in the Home Secretary’s drawer a few pages from the notebook with what appears to be an interpretation of the cipher.

Ellen

Overwhelmed by all this he confides in a recently created peer who knows all about the business world, who insists that they leave the house party at which they had met over dinner and discuss the matter with the Prime Minister who promptly summons the Home Secretary.

But the Home Secretary had gone to Scotland to launch a ship over the weekend, so the meeting could take place only on the morning of the Monday, when difficult questions were expected on the adjournment motion. He admits at the meeting that he had got Jenks to take the notebook, and also that he knew the code since it had been created by him and Oissel when they were young.

He thought he should resign, and even contemplated suicide, but the Prime Minister told him that that would be even worse for the government, and that he should go home to bed. The Prime Minister said that he himself would handle the question, which he did with aplomb, insisting that confidentiality was needed until the inquest. What had happened would be made clear then, he declared, leaving West and Inspector Blackit and Lord Dalbeattie what seemed the impossible task of solving the murder.

Dalbeattie had suggested that West ask a female Labour MP who was very fond of him to get what information she could from the staff. That there was some involvement there had become clear when West, going back late one night to collect a briefcase he had left in a dining room, found someone lurking in the dark in the corridor outside the private rooms. Room J, where the murder had happened, was meant to be guarded throughout by a policeman, but he had left the room having felt dizzy, and it seemed that his coffee had been drugged. West’s sudden appearance however had prevented anyone else getting into the room.

Dalbeattie decides to recreate the scene of the murder and has a dinner party in Room J on the Tuesday night, inviting West and Annette and the society hostess at whose house he had met, and also Patrick Kinnaird, an MP who was engaged to Annette, as well as the Permanent Secretary to the Home Ministry.

After coffee Inspector Blackit comes in with Grace, the Labour MP who had got the confidence of the staff, and a journalist who had also been helpful, and just as they say they think they are on the track the division bell rings. Grace jumps up and tells the Inspector that that provides the solution and they get a ladder, and sure enough find the revolver in the space where the bell is. Directed at the place where Oissel had sat, it had been primed to go off with the ringing of the bell. The waiter who had helped to set things up made clear who the murderer had been.

The reason for the murder and the confused motives of all those involved made for a fascinatingly intricate mix. But also impressive in the book were the descriptions of the isolation possible in the crowded premises of the house, the forceful characterization of the members – Grace based on the writer, the society hostess based on Nancy Astor, the first female MP – and the laid back nature of senior politicians which West realized had to change in the brave new world of high finance.

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The challenge of keeping value-based politics alive

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Anti-migrant protests in Durban, South Africa. BBC

The current outbreak of anti-immigrant protests in Durban, South Africa is bound to have taken many a subscriber to value-based politics or political idealism quite by surprise. After all, this is evidence that despite the historic accomplishments of nation-builders of the stature of the late President Nelson Mandela it cannot be taken for granted that identity politics, including racism in its worst forms, is no more in South Africa.

At the time of this writing details are scarce on the substantive root causes of the protests but it could very well be that economic grievances, particularly on the part of the majority community in South Africa, are contributing considerably to the disaffection. Shrinking employment and material prospects are likely to figure majorly among the factors igniting the unrest.

Fortunately, the local authorities in Durban are losing no time in calling for peaceful co-existence among the relevant communities and are pointing to the vital importance of stepping-up national integration processes. Apparently, immigrants in sizable numbers from neighbouring countries are present in Durban. However, international TV footage of the protests quoted some local authorities as saying that the majority of the immigrants in some centres that housed them were not illegal migrants and had the documents that entitle them to be in Durban.

In the Durban protests the world has fresh proof of the socially divisive consequences of the gathering globe-wide economic disaffection, touched off particularly by the continuing crisis in West Asia. Going ahead, the world would need to brace for increasing identity-based unrest of the kind it is just witnessing in South Africa.

Considering that the material lot of ordinary people everywhere could only aggravate progressively, with the US and Iran showing no signs of negotiating an end to their confrontation any time soon, it will be left to the more democratic and progressive sections of the world community to initiate positive measures collectively to bring a measure of relief to the discontented.

The swiftness with which such relief will be provided would depend crucially on the importance those sections taking up these undertakings attach to value-based politics as opposed to Realpolitik of power politics.

Going by these yardsticks, Italy could be considered to be moving in the right direction. Recently Italy came to the fore in initiating the collective named, ‘Rome Coalition for Food Security and Access to Fertilizer’, which has as one of its aims the swift provision of fertilizer to economically weak African countries.

In a recent statement Italian Minister of Foreign Affairs and International Cooperation, Antonio Tajani, said that a principal aim of the project was to ensure that the farmers of Africa gained easy access to fertilizer, considering that food security is a growing concern among some of Africa’s economically vulnerable countries.

The statement went on to mention that some 30 countries hailing from the Mediterranean region, the Middle East, the Balkans as well as the FAO had been invited to join the coalition. The venture is far-seeing in that food security is main among the reasons for social discontent which in turn could degenerate into endemic political turmoil and bloodshed. Separatist violence and geographical fragmentation of countries wouldn’t be too far behind these developments, as Africa itself has often proved.

It is hoped that more G7 countries would take the cue from Italy and do what they could to ease the hardships of economically distressed countries, particularly of the global South. In these efforts they would need to break rank with the US, which is today brutally indifferent to the consequences of its policy of making ‘America First’, come what may.

Going by current developments, the Trump administration seems to be blithely oblivious to the wider, deleterious effects of its policy course in West Asia. Besides rendering Iran militarily and otherwise impotent nothing else seems to matter to Washington, as regards West Asia. This is policy short-sightedness of an extreme kind. After all, right now West Asia could be said to be sitting on the proverbial powder keg.

On the other hand, Iran is not giving the world the impression that it is doing anything constructive to get out of the policy straitjacket that it wove for itself decades ago. Rather than enter into a policy of ‘live and let live’ in relation to Israel in particular and initiate a process of reconciliation with the latter, it has chosen to operate within policy parameters that continue to damn Israel. This has put Israel always on the ‘defensive’ so to speak and prevented the opening up of space for meaningful dialogue.

That said, Israel is obliged to explore the possibilities of entering into a negotiatory process with the Arab-Islamic world that could lead to a de-escalation of tensions and bloodshed. It cannot continue to look at its neighbours through lenses that distort them as archetypal enemies who should be ‘wiped off completely from the face of the earth.’

In other words, the need is urgent for Realpolitik to give way to value-based politicks. Italy is beginning to prove that the latter approach could be pursued with some success. May be the EU and the UK could throw their weight behind these initiatives as well and establish that international politics could be refashioned on the basis of humane, civilized norms. The UN would need to be fully supportive of these moves and prove an organizational nucleus of the operations that follow.

In fact the time is ripe for people of conscience to collectively stand up on the side of peace and say ‘No’ to war and violence. Organizations such as the ICRC, the WHO and Medicines Sans Frontiers have already taken up this call. Referring to the widespread destruction of health facilities and their dehumanizing results these organizations have said, among other things, that ‘This is not a failure of the law. It is a failure of political will.’

True, ‘failure of political will’ among those powers that matter accounts for the runaway, uncontrollable nature of war and destruction in contemporary times, but more fundamentally it is a failure of the human conscience. It could very well be that the phenomenal levels to which violence and war have been unleashed today have had the effect of deadening consciences. This is a matter for urgent study and wide discussion.

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Vesak celebrations … with Cuteefly

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Perfect for celebrations, gifts, and meaningful occasions // Gift pack

I would describe Indunil Kaushalya Dissanayaka as innovative and creative, and she operates under the name of Cuteefly.

Indunil always comes up with something novel to celebrate special occasions, and she does it with candles … and that’s her profession.

She was in the spotlight when she created a happening scene, with candles, for Christmas, Sinhala and Tamil New Year, and Valentine’s Day.

As lanterns light up Sri Lanka for Vesak, the Colombo-based candle maker is quietly turning wax and wick into little pieces of the festival.

Candles reflecting Vesak themes

Her candles reflect Vesak themes – light, peace, remembrance, giving, etc., to enable you to fill your Vesak celebration with devotion and beauty.

Among her Vesak creations is a lotus-shaped soy candle, scented with sandalwood, lavender, etc., meant to burn during this Vesak Poya Day.

Indunil Kaushalya Dissanayaka: Customers
praise her for her creativity

These handcrafted Vesak candles are perfect for offering at the temple, she says.

What makes her creations so novel is that they come in different shapes, scents, themes, and all are handmade.

What’s more, her customers have heaped praise on her for her creativity.

According to Indunil, her creations are perfect as a thoughtful gift … to bring beauty, unity, and light into every moment.

Says Indunil: “Our beautifully handcrafted Unity candles are designed with premium detail and love, making them perfect for celebrations, gifts, and meaningful occasions.”

Cuteefly, says Indunil, is available online.

Readers could contact Indunil on 0778506066 for more details.

He Facebook Page is: Cuteefly.

Handmade with love

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