Reparations and Prosthetics

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The Clemens Nathan Research Centre is an organisation dedicated to the promotion of international human rights. It is the research arm of the Consultative Council of Jewish Organisations, a human rights NGO with consultative status at the United Nations, founded in 1946 by the Nobel Prize Laureate Rene Cassin. Its constituent organisations are the Anglo-Jewish Association and the Alliance Israelite Universelle. It is named after Clemens Nathan, who is also its first chairman. The activities of both organisations have included holding lectures and conferences, and sponsoring books on human rights.

Clemens Nathan Research Centre

ISBN: 978-1-905178-33-9

Reparations and Prosthetics

In November 2008, a group of distinguished speakers came together under the auspices of The Clemens Nathan Research Centre to present and discuss papers on the issue of Reparations for Victims of Human Rights Abuses and Prosthetic Services. This interdisciplinary panel brought extensive and varied expertise to bear on an important and timely subject. This book brings together all the conference papers and discussion in one accessible volume.

Reparations and Prosthetics

Conference papers from the Clemens Nathan Research Centre Reparations for Victims of Human Rights Abuses and Prosthetic Services

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REPARATIONS FOR VICTIMS OF HUMAN RIGHTS ABUSES AND PROSTHETIC SERVICES

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Conference Papers Chester Autumn 2008

REPARATIONS FOR VICTIMS OF HUMAN RIGHTS ABUSES AND PROSTHETIC SERVICES

The Clemens Nathan Research Centre

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Note about the front cover image: This picture is of Daniel who is a farmer in a village in Northern Uganda. He was shot in the leg as he was returning to town from the fields and due to the unavailability of care it had to be amputated. He has been unable to go back to farming since 2002 and his family have only survived through charity. He is one of those for whom an artificial leg is currently being fitted (2009) and it is expected that if he follows the training he has received he will be ready to plough again in the next rainy season. He and all his family (his wife, two boys – his third son has been missing since 2002 – and his two girls) are happy that through the money earned they will be able to go back to school. His life and those of his children, perhaps even of grandchildren because of their parents' education, will hopefully be changed for the better.

André Laperrière

© Clemens Nathan Research Centre 2009 All rights reserved; no part of this publication may be reproduced in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise without the permission of the Publisher.

Typeset by Bound Biographies Printed in the United Kingdom ISBN 978-1-905178-33-9

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The Clemens Nathan Research Centre The Clemens Nathan Research Centre was established as the research arm of the Consultative Council of Jewish Organisations (CCJO). It is named after Mr Clemens Nathan, its first chairman, as a tribute to his many years of activity in the field of international human rights, starting with his collaboration with the eminent human rights pioneer, René Cassin, a Nobel Peace Prize Laureate, and a principal drafter of the UN Declaration of Human Rights. Clemens Nathan is the joint chairman of the CCJO and (among many other activities) chaired the Cambridge Centre for Jewish Christian Relations for many years.

Since the Clemens Nathan Research Centre’s establishment, it has initiated a number of projects. In February 2005, together with the Commonwealth Institute of the University of London, and Martinus Nijhoff Publishers, it held a Colloquium on Religion and Human Rights entitled, ‘Does God Believe in Human Rights?’. The 5

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papers, delivered by distinguished experts, were published

by Martinus Nijhoff Publishers.i Since then it has successfully organised conferences on Terrorism, Foreign Policy, International Development and Reparations for Victims of Genocide. The Clemens Nathan Research Centre is also carrying out a long-term research project, in collaboration with the International Bar Association and the Raoul Wallenberg Institute, University of Lund, Sweden, on formulating rules for the conduct of international factfinding missions.

The Centre’s Director is Raphael Walden.

Prior to the Centre’s establishment, such projects had been part of the range of activities undertaken directly by the Consultative Council of Jewish Organisations. The CCJO, as it is commonly known, was founded in 1946 by Jewish organisations from both sides of the Atlantic to encourage recognition of human rights for all people and the protection of Jews from persecution in all parts of the world. It is an NGO with consultative status at the United Nations, and its constituent organisations at present are the Anglo-Jewish Association and the Alliance Israelite Universelle. A recently-formed younger members’ group, CCJO-René Cassin, is affiliated to it.

Through its constituent organisations, the CCJO played a central role from the beginning of the negotiations 6

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in the defence of the rights of surviving victims of the Nazi Holocaust to reparation and restitution. In the 1970s, it lent its weight to the campaign to highlight the plight of the persecuted Jews of the Soviet bloc. The CCJO was also particularly concerned with the situation of former slave workers who had not received compensation. It is now following closely the development of UN guidelines on reparations, restitution and compensation which will underlie the right of all victims of international human rights violations to recourse to justice for the evils they have suffered.

The CCJO has been an active supporter of efforts to increase the effectiveness of the UN’s human rights treaties and institutional mechanisms in the intervening decades.

From the 1940s to the 1970s it was involved in the creation of the United Nations human rights instruments which form the basis of the UN human rights protection work today. The CCJO keeps a watching brief on all international human rights problems and developments, and has taken a particular interest in the establishment of an international criminal court to deal with gross human rights violations.

CCJO briefings have been presented to various international bodies on subjects ranging from the conflicts in former Yugoslavia to problems relating to laws dealing with the migration of workers.

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More recently, the CCJO has held lectures in London given, among others, by Dr Bertrand Ramcharan, Deputy UN Human Rights Commissioner, and by M. Robert Badinter, the former French Minister of Justice. Its representatives have taken part in the Durban Conference on Racism, on Conferences on Counterterrorism in Israel, and meetings and conferences on anti-semitism held by the Organisation for Security and Co-operation in Europe (OSCE). The CCJO has also sponsored a collection of essays on Racism and Human Rights, and a work by Professor Anne Bayefsky entitled How to Complain to the UN Human Rights Treaty System.

The activities of both the Clemens Nathan Research Centre and the CCJO have benefited from the very generous support of the Shoresh Charitable Trust.

i.

Does God Believe in Human Rights? Essays on Religion and Human Rights (Leiden: Martinus Nijhoff, 2007), Edited by Nazila Ghanea, Alan Stephens and Raphael Walden 8

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Preface The origin of this meeting lay in a previous Clemens Nathan Research Centre conference ‘Reparations for victims of genocide, crimes against humanity and war crimes: Systems in place and systems in the making’ which was held in The Peace Palace at the Hague in March 2007, in association with Redress. This drew on experience of reparations for victims of Nazism that could contribute to the development of ideas and practice to assist victims of the human rights abuses which sadly are a feature of the world more than 60 years later. One of the problems in addressing such issues is the magnitude of the topic and it was thought that a further conference that concentrated on the particular aspect of physical rehabilitation and prosthetic services would be valuable.

The 2002 decision of the Rome Institute combined an organisation to provide advocacy, physical and psychological rehabilitation and material support, the Trust 9

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Fund for Victims, with the International Criminal Court (ICC). We are extremely grateful to André Laperièrre, the Fund’s Executive Director, for his advice and for contributing to this conference. The International Committee of the Red Cross (ICRC) is massively involved in this area and we were very fortunate also to have a presentation from Claude Tardif, Head of its Physical Rehabilitation Programme. We are in addition deeply indebted to Dr Robin Luff and Professor Malcolm MacLachlan for presenting their expert viewpoints.

Our gratitude is due also to the Committee of the International Society for Prosthetics and Orthotics UK National Member Society (ISPO UKNMS) for agreeing to have our conference in conjunction with its Annual Scientific Meeting, and especially to Joe Wilkinson for his advice and assistance.

The 2006 UN Convention on the Rights of Persons with Disabilities established that access to rehabilitation services is a human right. We very much hope that the conference proceedings will be helpful to all those involved in making this a reality.

Clemens Nathan Chairman CNR Centre

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Contents The Clemens Nathan Research Centre Preface Contents Contributors Introduction

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Presentations The Concept and Practice of Reparation Mr André Laperrière

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Prosthetic Services in Conflict Zones Mr Claude Tardif

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A Clinician’s Perspective Dr Robin Luff

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Psychosocial, Research and Global Issues Professor Malcolm MacLachlan

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Contributors Clemens Nathan, Chairman David Abrahamson, Co-ordinator Clemens Nathan Research Centre Guest Speakers Mr André Laperrière Executive Director, Trust Fund for Victims, International Criminal Court (ICC) Dr Robin Luff Consultant in Rehabilitation Medicine King’s College Hospitals NHS Trust, London Professor Malcolm MacLachlan School of Psychology and Centre for Global Health, Dublin University (Trinity College) Mr Claude Tardif Head, Physical Rehabilitation Programme International Committee of the Red Cross (ICRC) 13

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Introduction A number of themes emerged from the wide experience and varied viewpoints presented at this stimulating conference. Perhaps the most central was that the affected individual’s wishes, interests and goals must be in the forefront at all times: ‘they know better than you, because they are there and that is their life’, as André Laperièrre put it in the first contribution.

In his experience accountability was the victims’ non-negotiable request: they needed to hear the perpetrators express regret and accept responsibilty for the harm they had inflicted, or if not for the Court to make clear where the guilt lay. Time and assistance are often necessary for the complex emotional effects of trauma to lessen sufficiently for them to reach this stage. The other main priority expressed by victims was to regain as normal lives as possible, including personal dignity, work, family and community. He presented several moving examples of courage, adaptability and enterprise, even forgiveness, in this quest.

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Many obstacles have to be overcome, including the stigma attached to damaged individuals by their societies, and sometimes by themselves. Many of the 3000 potential beneficiaries of a large plastic surgery initiative in Uganda had been rejected by their communities because their mutilations were a reminder of past conflict and shame.

Some were completely isolated and very difficult to access: understanding, explanation and encouragement were essential to involve and support them. The scale of needs tends to be severely underestimated and to attract only fleeting interest in the media: concerted advocacy is essential. In conclusion specific suggestions about developing and improving services were set out.

Claude Tardif next described how civilians are nowadays the main victims of wars and conflicts. Societies were damaged by these at every level, economic, health and cultural and can descend into chaos. Health services may be virtually non-existent. Victims and their families easily find themselves trapped in vicious circles of stigma, extreme poverty, ill-health and neglect, from which it is very hard indeed to escape. Help to do so needs to extend well beyond medical interventions and links between these and other aspects of society may be critical.

In terms specifically of services for amputees, he and other speakers emphasised that they must be multidisciplinary and provide more assistance than simply 16

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prostheses. They must fit local needs and empower local people; a long-term commitment is vital, and they should eventually become fully the State’s responsibility. The prostheses themselves must be straightforward to fit, use and maintain and indefinite after-care is essential. He described the effective low cost technology using recyclable polypropylene developed by the ICRC. Eighty-seven rehabilitation centres in 26 countries are supported. Every aspect of treatment may have to be provided or fully subsidised, including safe transport and in some countries dual services for men and women., The monetary needs may be very high, especially in the earlier stages, but the remarkable way in which state services can develop and eventually take over was illustrated by Cambodia, where the funding contributed is now only about 10% of that 10-15 years ago.

Dr Robin Luff explored related themes from extensive experience as a rehabilitation physician and a member of the International Society for Prosthetics and Orthotics (ISPO). He underlined that the impaired individual’s interests were central and that understanding the local circumstances and culture is the first priority for meeting them. The possibility existed of misjudging the need, getting the impairments wrong and imposing an inappropriate model of care: ‘we should not from a developed or industrialised nation perspective inflict on a 17

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different sort of culture our views of what prosthetic services should be’.

He again emphasised that rehabilitation involves more than supplying a prosthesis. Indeed, obtaining one may not be an amputee’s first priority; it may be feared that maintenance and repairs will not be available, alternative help may be preferred, or the community may consider that funds could be better spent than on a rehabilitation centre.

On the other hand, with a functioning prosthesis amputees can walk and work, they are whole again, and especially for women marriage prospects are improved. Long-term commitment by all services is absolutely vital. He also emphasised the need for co-operation rather than conflict between governments, political oppositions, NGOs, charities and others. Similarly, there are both problems and opportunities in the input of commercial prosthetic suppliers and he considered that the Clinton initiative approach of obtaining commitments from them for several years in advance may be very fruitful.

Professor Malcolm MacLachlan, in the final presentation, outlined a study by the Dublin Psychoprosthetics Group that threw light on the relative contributions of disability and coping factors to outcomes among a large group of Second World War amputees, using the Trinity Amputation and Prosthesis Experience Skills (TAPES) amongst other instruments.

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The Trinity College Centre for Global Health is a participant in the Equitable study, a comparative project that will examine the barriers to service access in four African countries from the perspectives of users with all kinds of physical disablement. He emphasised that there cannot be equity without fair access; not only negative community attitudes are involved, clinicians may place disabled patients literally at the back of the queue. Another project, also in four African countries, is examining the role of research evidence and how best to get it put into practice, as well as other influences on decision making. At present established solutions for major problems remain unimplemented or are implemented too narrowly. The Centre also addresses human resource issues, including training; an important aspect that was also addressed by other speakers. Mid-level cadres are trained to do specific, focused professional tasks to provide an affordable, effective service. They start with a restricted level of qualification and can work their way up, remain at wherever level they wish, or go on to qualify as doctors and specialists, without draining resources by moving to western countries.

He considered this might be a good time to make progress and drew attention to the UN Convention on the Rights of Persons with Disabilities, the expected World Heath Report, and new guidelines on the ethos of Community Based Rehabilitation (CBR) due to be 19

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published. A network has been developed by The African Decade of Persons with Disabilities (SADPD), Stellenbosch University and Trinity College to bring together policy makers, clinicians, researchers, DPOs, NGOs and others to join up thinking more effectively.

In the lively discussions, questions were raised about the balance between planning comprehensively in advance and starting by getting particular schemes off the ground, perhaps with humble expectations. The related issue was concern that services for a particular group on the basis of the disability’s origin has the potential to discriminate against those with similar needs from other causes and to impair integration. It was agreed that needs are the priority and individuals should not be denied services that could help them. A service intended primarily for one group could begin a process that later extended to all or join with or support wider services. There are many aspects involved, for example a situation where most limb loss results from deliberate trauma differs from one where this is rare.

Perhaps progress can be made if more evidence on these and other contentious issues is sought co-operatively, not least through networks such as that described above.

David Abrahamson Co-ordinator CNRCentre 20

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The Concept and Practice of Reparation Mr André Laperrière Introduction by Mr Clemens Nathan The Clemens Nathan Research Centre is an organisation dedicated to the promotion of international human rights. The idea for this conference was developed when we were in The Hague, at our major conference dealing with gross violations of human rights and indemnification for these. We had people from 80 genocideafflicted countries flying in and discussing their problems, along with members of the International Criminal Court (ICC). The conference was extremely successful. What came out was that we know very clearly what the problems are, but where do we go next for solutions? Our first speaker, André Laperrière, and I have discussed this at length, and I felt that we ought to have a conference looking at ways in 21

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which P&O (Prosthetics & Orthotics) can be developed for countries that have suffered or are suffering through human rights abuses. So we decided we would come here and do this as an experiment, and get some absolutely top people to discuss this to see where we to go next.

The Clemens Nathan Research Centre is the research arm of the Consultative Council of Jewish Organisations (CCJO) which was founded in 1946. The CCJO alongside other organisations dealt with holocaust victims at the end of the Second World War. This has involved caring for 600,000 victims living in 37 countries, negotiating settlements with the governments where they had been maltreated in concentration camps and sorting out welfare systems for them. There are now only 300,000 alive but we find that after 60 years the problems from which they suffered are still there for some of them, and the trauma and stress don’t go away. Money has never been a solution for their problems but it did serve as an acknowledgement of what they had suffered. Those countries that gave money have, by and large, behaved extremely well and realise the enormity of what was done.

Just to give you a brief example: in the 180 concentration camps in Germany and the rest of Europe many women had medical experiments carried out on them, and some of the few who survived went on to have children.

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Just two years ago we found that 600 of these children, now adult, were severely malformed or disabled. Virtually none of the women had ever mentioned that they had children.

We were suddenly confronted with this awful job: how do we negotiate additional compensation for these 50-60 year olds, damaged children of those survivors of the concentration camps ? We received money from Germany – a very small amount – and decided it would be better to divide it equally between all the women still alive, and those who had children could use it for their care. To give doctors the responsibility of deciding which were most eligible as a result of the torture in the concentration camps would have been impossible. That seemed to be the best solution for distributing compensation for these victims. There are other problems which confront one which similarly are not evident in advance.

Now our first speaker is André Laperrière, who has been an anchor for me in working out some of the problems, and I believe I have helped him out as well. He is the Executive Director of the Trust Fund for Victims at the International Criminal Court (ICC) in The Hague. This is a very senior position – welcome to André.

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The Concept and Practice of Reparation by Mr André Laperrière Firstly I would like you to become acquainted with the Trust Fund for Victims so that you know a little bit about what we do. But more importantly, I would like you to become aware of the reality of the victims in war and post-war environments in terms of people and their situations – and what may be possible to help them in realistic and practical ways that take into consideration their wishes and their hopes for the future.

Just a couple of weeks ago I had the opportunity to facilitate the annual general meeting of the board that I represent, the board of the Trust Fund for Victims. My board is composed of very eminent people, including His Grace, Archbishop Desmond Tutu who represents Africa. Archbishop Tutu said something at one point in reference to victims and what 24

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we see daily on television: “Now we see so many victims every day that we became saturated, and they just become statistics, faceless numbers.” I think that is so true, and therefore what I want to get across is the fact that these are real people like you and me; people I have met, people you could know because they could be your neighbour, your brother or sister, or your parents.

In July 2002 the Rome Institute pushed the borders of traditional justice into avenues internationally unknown until then, by combining a tribunal, the International Criminal Court (ICC) with a reparatory mechanism, the Trust Fund for Victims which I have the honour of representing. We thereby originate from the Rome Institute which created these two independent but complementary entities, the Trust Fund and the Criminal Court. The part that is most visible and best known is the traditional prosecution element with Mr Okampo, a good friend of mine, who is bringing to trial a number of people; if as a result these individuals are recognised as perpetrators there should be a court order requiring them to repay damages to the victims – hence the concept of reparations.

The name ‘Trust Fund for Victims’ is not really very original, but the concept came about because these victims would most likely be very far away in remote countries where data was scarce, and maybe there was a lot of chaos.

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Therefore it would be prudent to have an independent body that could be the go-between for the victims and the legal process through the relevant chambers, to advise the court on how best to make use of the resources available for the benefit of victims. So that was the first mandate of the Trust Fund: to assist the legal chambers. But then came the second conclusion. When you consider genocide and war crimes, or crimes against humanity, you are talking about long-term trials that could last two, three or maybe four years, which in the life of the victims is an eternity. We were therefore given a second mandate which is also a narrative, whereby we are allowed to intervene in assisting the victims while a trial is going on, provided we do not interfere or cause prejudice to anyone. So we can act immediately to assist victims that are in urgent need.

The third mandate is an acknowledgement that when dealing with countries that have been at war for the last ten years, or when there are millions of people on one side or the other of the country within the conflict, you reach a point where it is impossible to consider the traditional courts the way to process it all. It is just too big and too much. So you end up with a situation of selective justice where the courts have to prioritise.

Since 1998 five million people have been killed in the Democratic Republic of Congo alone. Five million people!

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It is probably the largest genocide since the last World War, yet many people do not know that. It gives you an idea of the magnitude of the conflict and even today there are still pockets here and there in very remote areas; groups of victims that are totally isolated from the rest of society, from the government, from anybody. So they are just left on their own without any assistance, and obviously without any trial. The Trust Fund was given a mandate to assist these victims, although they are not linked directly to an ongoing trial at the ICC. That is an example of the innovative element of the Rome Institute.

So that is my first point, to explain a little bit about how the Trust Fund for Victims is organised, and also to emphasise the fact that justice, if only for practical reasons, is selective. You cannot have two million witnesses at a trial.

Otherwise it would be twenty years before having the last testimony; it would be unfair for the victims as it would take too long, and it would be unfair for the accused because they may not be guilty. What the prosecutors tend to do therefore is address what they can prosecute in a reasonable period of time. So they select from all the crimes that are put forward. That is why at the ICC there are a number of people who are accused of certain crimes, but are suspected by the population to have also committed other crimes for which they are not being tried at this point – again for 27

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practical reasons. So, if justice is selective then this means there will be some crimes that may never be tried, and some victims who may never have reparation in its full sense.

When I talk to ask victims I ask them, “What would you like, in terms of trying to undo the harm that has been done to you?” – because there are many different forms of reparation. We understand it in all kinds of different ways but our approach is one of reparative justice, whereby we are trying to help the victims benefit as much as possible by undoing as much of the harm that was done as possible.

That is the angle we take and, with that in mind, we then also ask them, “What do you think it would take for you to get back to a normal life?”

Typically they mention two things. They say one thing is not negotiable, and that is accountability. I have heard this in Iraq, South America and Africa: “We want those who did this to us to say ‘I did wrong to you and I am sorry’.” This is very important because firstly it helps the victims towards a sense of closure. Secondly it acknowledges the fact that the other party is the perpetrator, and de-facto removes the burden from their shoulders by saying that they are the victims, that they did nothing wrong. Because very often the tendency is for victims of aggression (mass aggressions, or individual aggressions where someone gets attacked walking home at night) to think “Why did I go out 28

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at that time? Maybe I should have gone earlier, I should have taken a taxi… so maybe I did something wrong”. Victims develop this sense of guilt, and when the perpetrator acknowledges that they did them wrong and apologises it helps a great deal to remove it from them. The second best case scenario, if the perpetrator refuses to apologise, is for the judge to say “Mr So-and-so, you did wrong to these people”. So these are the perpetrators, and they are the victims and they need our help. That is the first thing they insist on: accountability.

The second one, amazingly, is not money. When I ask victims “What would it take to go back to a normal life?” they say initially that they want their basic needs met; they want food and they want to survive. But really their aspiration is to get over it and go back to the kind of life they had before. Let me give you an example: Victor is from Uganda, an exceptional man. He is married to Mary and I have met them both. He has been a victim of rebels in northern Uganda, who purposely disfigured a number of people and then set them free. So, unwillingly, these poor people became living instruments of terror when they returned to their village. Everybody was scared. They contributed unwittingly to the dislocation of their social environment. Victor is one of the beneficiaries of a plastic surgery initiative that we are carrying out in 29

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Uganda. At this time, (2008) 300 people are in the process of having surgery. Our target group is around 2,000, so there is quite a long way to go before we are done. Victor’s facial mutilation was such that it could not be repaired in a single operation; massive disfigurements require several. In his case he had two. As we were coming to the third operation he said, “I do not need it, I am happy with the face I have now.

I’m OK.” I mention this because it is an exception.

Disfigurement and maiming can lead to rejection. I recall one poor woman in Victor’s situation who, on returning home, was thrown out onto the street by her husband who told her, “You are not the wife I married before, so I do not know you any more.” She was just rejected. In Victor’s case Mary did not reject him. I’ve seen the love between them in their faces. She accepted him just the way he is now, so he chose not to have any more operations on his face.

For some form of normality to return to the victims’ lives you need their victims’ input because they know the subject better than you, because they were there and it is their life that has been affected. They have their culture and their vision of things. I doubt that if Victor was a British citizen living in the UK he would stop there: I think he would want the next operation and perhaps more after that.

Furthermore, mass crimes normally occur in a situation where chaos becomes the rule, where almost 30

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everyone is dragged into and affected by the conflict.

Therefore when peace returns, the society has to define a social balance between the need for accountability and the need to forgive to some extent. These are the two principles that arise from the victims’ own perspective: accountability and going back to a normal life. Examples include youngsters who are dragged into inflicting horrors on others. They eventually have to acknowledge that what they did was wrong, and they want to compensate for their wrongdoings, to do something for their society, go back to school and contribute. Maybe forgiveness should play a key role in their reintegration. What I am trying to demonstrate with this example is the important social element to reparations.

Here is another story about return to normality in terms of society. Temba was a farmer from Sierra Leone. He had a family – and two strong arms. One day the rebels came. They looted, they burned the house, they raped, they killed his mother. When he refused to join them, one of them cut off his right arm. So now Temba calls himself a gardener. He tends peppers and okra with a hoe. ‘Proper crops’ like cassava, sweet potato and rice he leaves to men with two arms – or their war widows! Most days his arm hurts. He says that when his arm hurts he thinks bad things about the men that left him this way: “My heart boils”. In a 31

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village about a mile away just over the Liberian border, a man called Falasikila was kidnapped by the RUF (Revolutionary United Front) and forced to become a rebel.

So when the war in Liberia spilled over into Sierra Leone, Falasikila’s unit tried to abduct Temba, who resisted.

Falasikila was then told to cut off Temba’s arm as a punishment. Falasikila recalls, “So I said, ‘My dear friend, please forgive me,’ and I took the hand and laid it on a stick and cut it off”. If Temba remembers the ‘dear friend’ part, he does not tell. What he will tell though is the story that unites him with Falasikila. ‘Fala’ came to apologise and Temba responded by saying he would forgive him. When someone kills your relatives and apologises to you, and you forgive the person, there will be peace.

The bitter irony of war is that years after its end, the perpetrators and victims still need each other so that the country can be rebuilt and normality can resume.

Reparations cannot become complete without closure. This is why the Trust Fund incorporates symbolic reparations and reconciliation initiatives in its projects.

The second element that needs to be factored in when considering reparation is the cultural environment. A key element in the rehabilitation of victims is the return of their dignity. Their social environment must accept them as victims, not symbols of shame, not symbols of the crimes 32

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they were victims of or of transgressed taboos, triggering fear in society. In particular abducted children, victims of rape, victims of facial mutilations or maiming typically face very strong rejection and exclusion from their community, friends and family, leaving them struggling to survive. These victims may sink into social decline that further exacerbates their exclusion. Here is a picture of one of them who cannot work and is living by himself in a hut.

It is a little over two years since the guns fell silent in northern Uganda. But the scars of this 20-year war are still fresh for many victims such as Mr John Bosco Bonner, who told me the following story: One day I was riding a bicycle to a public auction to sell my merchandise when I rode over a mine. It exploded and shattered my left leg. Immediately after this incident my wife, with whom I had four children, ran away. It felt like the end of my life.

From self-employment I have been reduced to a beggar. It’s difficult to explain that I was at one time an able-bodied person. Now I am without one of my limbs. There are many challenges when the community looks at you and makes all sorts of comments, or laughs. You must be strong-hearted to live on.

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Many landmine victims like John came together and initiated a clay project that enables them to earn a living.

They make clay ventilators, flowerpots, inter-lock bricks.

The mother of two men who are part of this association that John created said something particularly striking. She said, “You see, some of them do not even have hands but then what they do is bring relatives to work for them so that they can earn something.” It’s remarkable how creative and resilient people can be when they want to return to some form of normality even when, as in this case, it is through the hands of someone else. John’s clay-making association currently has 258 registered members. With the help of one of our partners he has even been able to get some artificial limbs.

However the needs are very great. Uganda alone has more than 3,000 survivors of booby traps, landmines and other weapons who are still in need of our help… in need of your help. Uganda is only one of those countries. Very often it is innocent people affected like the young boy I met in Iraq. He was playing with what he thought was a little aeroplane but turned out to be a non-exploded cluster bomb element. Cluster bombs are composed of mini-bombs that disperse with the wind and fall over a large surface. They are supposed to explode when they land, but they do not always do so. To make sure that they disperse there is usually a little 34

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winglet attached to them, so when you see one on the ground it looks like a little aeroplane. That was one of my battles when I was in UNICEF, to fight this deception, because children try to play with them – like this child who ended up losing an eye and a hand and half of his other hand.

A third element when considering reparations is time. Further to any trauma as mentioned earlier, victims go through a series of stages including terror, shame, guilt, to one whereby they have gained enough strength to seek help and justice. Yet each victim or group of victims evolves their own pace on this ladder. So what that means in practice is that many victims of mutilation remain unknown, sometimes for much extended periods of time due to this fear, shame, guilt or trauma that prevents them coming forward. I was in Monrovia recently and I remember a person I met there. He was selling recycled gun shells. He was making little crosses with them, and he was missing an arm. So I asked him, “What happened? Did that happen during the war?” “No,” he said, “It was a car accident.” But it did not look like a car accident to me. Anyway, I bumped into him a few times and the third time I met him he said, “Yes, that happened during the war.” Why is that? My impression was that he felt shame for his country, that the country went into that war, and that he himself had been dragged into it. So shame is very strong and it can last a very long time.

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When we implement a reparation mechanism it has to allow sufficient time for those who will not emerge immediately to come forward at a later date and still be helped. In the meantime at the Trust Fund we have established a network of NGOs (Non-Governmental Organisations). There are around 250 NGOs that work with us in Africa in particular who are searching for these victims, because they need to be convinced. They need to be convinced that if they come to get help the perpetrators will not come for revenge, that this is finished and we are not linked to a trial, and the fact that they are being helped does not mean anything negative. We will only make their lives better. But these fears are very strong; I will relate one anecdote. One day I was in Gulu in northern Uganda where I had brought a number of victims of disfigurement into a hostel we had. They were supposed to go from there to the hospital the next day for their operations. That night four of those awaiting operations fled back to their village because they got scared at the last minute. We followed them there and managed to convince two of them to return. But it’s quite a battle, an internal battle, that these poor people have when they need help.

Another aspect of reparations to be aware of is the different elements involved: practical elements, social elements, and also psychological elements. By only focusing 36

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on one without the others, the chances are the reparations will not be successful. The last one is the economic element.

It is nice to come with effective treatments and make facilities available, but most of these people come from very poor environments. As if that was not enough war made them poorer. So now they are in a totally desolated environment where the economic structure is either nonexistent or totally dilapidated, and because of their handicap they personally cannot even benefit from or participate in what remains of the economy. So my advice to those interested in providing reparations, or just the medical or even the material element of reparation, is to be humble, to look at doing something that is realistic and effective.

Remember Victor? Victor did not ask to look like a film star, he just wanted to feel good within himself and that’s how he feels today. So when we provide, or contribute to providing, prosthetics or other forms of assistance, we should establish what the victim, himself or herself, has in mind. From this we can better understand the requirements, which may be because their requirements are not only a good deal more modest, they are also a great deal more sustainable than if you try to impose western-orientated attitudes and technology.

I would like to promote three suggestions, and I invite you to support me in this advocacy. One suggestion is 37

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that we talk more to those who produce the prostheses, especially hand prostheses because there is a particular shortage of them in Africa. Maybe we could contemplate creating a corporate commitment, a pool of prostheses that would be given over a certain period of time. I recently attended the Clinton Global Initiative and I like that formula whereby various companies make a commitment over the subsequent two years to give 500 prosthetics to organisation X – which I hope would be the Trust Fund but it doesn’t have to be. As long as it benefits the victims, and as long as the organisation factors in all the economic, practical, social and psychological aspects that I have mentioned, then I believe it’s a good thing.

My second suggestion is for more training, because if we manage to make more prostheses available more people will be needed on the spot to help ensure the best use of them, for as long as is necessary. So building the local capacity to manage this is very important.

My third suggestion concerns monetary contributions, because when we receive small donations from different sides and pool it, and link up with other partners like the ICRC (International Committee of the Red Cross), then we have leverage over these companies and we can buy their prostheses at a more advantageous price. This is one of our goals. Maybe if we are humble enough and 38

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think of developing, not everywhere but in some areas, local capacity for the production of less sophisticated but effective prostheses, that can make a difference to the lives of more people. So this is why I am soliciting your support. Because I believe that through advocacy, if we really put our hands together, we can make a difference.

The minute the court has jurisdiction in a country we can go there and gather information. We discovered many things that we didn’t know before. For example, in most of the Congo about 30% of the children that were abducted were girls, although we tend to think of child soldiers typically as boys. Thousands of girls were abducted, and they can come back in even a worse situation than the boys. When the boys return they are labelled ‘rebels’, so they are rejected as murderers and awful people; they also tend to be a bit rough because their only school was the one of the bush, so they have to be re-socialised. The girls have generally also had no education, they may have been repeatedly raped and often when they come back they have children. So they have everything against them. The magnitude of this problem and the complexity of the situations they face were unknown before.

In Northern Uganda, the same thing, we initially thought there were only 300-400 people in need of surgery, but investigating further we found 3,000 people who were 39

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living with major mutilations. We have identified victims that would otherwise not have been helped by anyone, or not for a very long time. Beforehand we were not aware of what could or needed to be done, but now that we are aware the challenge is one of collective advocacy and responsibility.

We have a duty to make the world aware of all this, so that collectively we ensure that the needs of these victims are addressed now and, even more importantly, that it never happens again. Now this is where our challenge lies because on CNN television the reporter is given about 20 seconds to relay what is happening in Liberia before they move on to another country. Twenty seconds is extremely short so the collective memory fades away very fast. We need constantly to put the issue on the table and find more and more forums in which to raise it, and be the voice of these silent victims.

That’s the only way ahead; we have more tools, but at the same time we have more responsibilities.

Mr Clemens Nathan: Thank you AndrĂŠ for such a wide-ranging and moving presentation. Would you like to say more about how the plastic surgery programme in northern Uganda came about and how it is progressing.

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Mr André Laperrière: When we went into Northern Uganda we were looking at communities and villages that had been destroyed by the rebels and, of course, at what goes with that trauma.

Everybody was talking about medical needs and about child soldiers, but nobody had told us about disfigurement. The first time I bumped into somebody like Victor I was surprised to say the very least; and then I bumped into another and then another, and I asked, “Who is helping these people?” Then I asked them, “Who is helping you?” and they said, “Nobody.” Considering it is so obvious that these people have a desperate problem, it is hard to understand why nobody is helping them. There is partly the practical element: they are not all in the same village, they are spread over a wide area – one or two over there, and 100 miles away there are others in the bush. So it’s difficult for any team of experts to treat the people when they are so widely dispersed; the medical facilities cannot be brought out to them. So I decided to find someone who could carry out these operations, preferably at a favourable price because plastic surgery is very expensive.

The first group I communicated with was an NGO of plastic surgeons from Nigeria. A few years ago there was a terrible fire caused by people stealing gasoline; many people were severely burned. As they were very poor they 41

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were treated free-of-charge by this group which subsequently carried out plastic surgery elsewhere. In talking to them I discovered that the NGO Interplast Holland had already operated in Uganda, amongst other places, but in this case the project was a failure. I spoke to Dr Zeeman, who is in charge, and he explained, “ We went there for ten days and only got a handful of people coming forward even though we sent communications out; we thought people would come because it was free.” They hadn’t fully taken on board the fear, the social elements and the practical reality that the people are spread out over a very wide area.

Fear was an important factor. The NGO said, before a second attempt, “We would like to do a pre-diagnosis so that we can know what instruments and medicine to bring with us”, because they bring all they need to do the operations, “So we need to take photographs of these people, of their faces and their profiles for preliminary diagnosis”. But some flatly refused to have their picture taken because they were frightened that it would end up with the prosecutor, that they would be brought into the legal process, and then the perpetrators would come for vengeance.

That’s why it hadn’t worked with Interplast Holland, although it is an excellent oganisation, and we 42

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approached Dr Zeeman to try again using a different methodology. Through our network we managed to reach a lot of people; the first group of 68 came from a very small area as the rains had come by then and it was difficult to move around. This demonstrated that, by taking the time to go to the people, listen to them, talk to them and consequently alleviate their fears, we could then organise the logistics around them. At this present time we are due for our second round (the third for Dr Zeeman’s team) and this time approximately 300 will have surgery. So that’s how progress is made. Any form of reparation cannot be in isolation. There is no silver bullet, no one single element that can take care of everything. It has to be approached in a holistic manner, and we learnt that very early on in that project.

Dr Robert Luff You told us about the victims’ prime interests being accountability and normality. When the victims talk about normality, are they addressing their personal normality, or normality of society?

Mr André Laperrière: I think they are addressing both, but in sequence.

The issue around society comes early on, generally soon 43

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after the aggression, because some of the victims I spoke to have been traumatised very recently. They said their first priority was for the rebels not to come back, so nobody shoots at them any more. That was one aspect of normality, that there would at least be security – that was the equation.

Talking to them sometime afterwards, we found that the normality they craved in this particular village was to rebury their dead properly, because when the rebels came they buried people randomly wherever they fell, as they thought the rebels could come back at any time. They said they wanted to heal those who are still living with bullets or shrapnel in their bodies, so they needed some medical assistance. There was also a need for trauma counselling because they said that people would wake up screaming in the middle of the night and crying uncontrollably (adults included) because of the fear and the trauma. They also wanted to know where their relatives were because some of them had fled and could be in a camp or have died, but they didn’t know because of the lack of communication. So they want to recreate some social environment starting with their family and then existing friends and maybe new ones, because some may have disappeared.

Finally, they want to have some form of economic activity that allows them to provide for themselves. These remote societies within villages in Africa, as well as in many 44

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other continents, live in quasi-independence from the rest of the country. The social system is individual to each village; it is like an eco-system in that the old provide for the young and vice-versa. That’s the normality they are trying to recreate. If some pieces were removed by the rebels then through a dialogue the villagers need help re-building a new eco-system that will work.

Questioner from the University of Salford: How do you prioritise where to allocate the resources? There seems to be so much need for only a certain amount of funding and, given the current state of the economic situation throughout the world, how can you decide how much to put towards plastic surgery?

Mr AndrÊ Laperrière: By doing two things, essentially. You have to define how high you want to set the bar, and of course the needs are immense. Even if you had billions it would probably not be enough to do everything. We would like to implement what my board has established as the level of recovery, a level whereby the victims are able to operate again so they can overcome most if not all of their trauma and have their medical problems attended to; they can manage to recreate the social environment around them, maybe rejoin family 45

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and friends and have an activity that generates some income for them. But it doesn’t mean that they get back to being as they were before; maybe they have to deal with living in a hut that is smaller than the one they had, and there are many things they don’t have that they had before, but at least they are self sustaining. So that’s where we set the bar.

If we were the World Bank and were rehabilitating a whole village, we would build new homes for everyone and a highway to get there, but that’s not what we do. What we do is support the victims in doing the work themselves.

They build the road to get there, they cut the bush that has grown there over the years, they start the replanting. We just coach them and give them a little input. That also helps to keep the cost down a great deal.

The second criterion that we are looking at is who are most in need. Disfigured people are clearly a priority because they are so excluded, so much so that even if they still have hands and could work, nobody would deal with them because they are too scared; nobody would buy their vegetables, no-one would sell them anything, no-one would even want to see them. So we thought these people needed to be helped as a priority. The girl abductees are the same, and the rape victims: they have no education so they have no means to survive, and they cannot go back to the family for some time. They are desperate. They are in the street 46

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begging, or acting as prostitutes; we have even seen some returning to the bush to those who beat them for years, because at least there they have food for their children. So that’s how we prioritise those that suffer the most. There is a subjective element to it, I agree, but that’s what we have to do.

Lastly on the subject of funding, this year one third of our funding came in the form of donations in-kind, like the free plastic surgery for example. At other times logistical requirements are provided free-of-charge by some of the partners, because as in the case of disfigurement, we needed five partners: Interplast Holland carrying out the operations, St Mary’s Hospital in Gulu letting us use their operating theatre free-of-charge, doctors from Kampala, Uganda, who came to learn and also help free-of-charge; we also had two local NGOs that helped with the logistics and counselling and to bring people back and forth. So every time we deal with a group of victims we compose a team that provides expertise, resources and even money.

Now we are dealing with some international NGOs that help us build-up the capacity of the local NGOs and also match the funds that we put in. As a result there is a very fast turn-around time, be it for operations or to help rebuild a whole community. A standard timescale for us is six months. Within six months you progress from total bush 47

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and destruction to a village that is operational again. Also, because of the input from different partners, the cost per beneficiary is a one-time investment of 5 euros – and the life of these people is changed forever. So proportionally it doesn’t cost that much, but to reach that point partnerships need to be established, and you need to be humble. That’s also true with the prosthetics. I am no expert, but I know science does miracles and now we have prosthetics that do almost everything; however that’s probably not what these people need, because they can’t maintain them and they are too complicated for them. The first time one breaks there is no-one to repair it for them, so they need something simple – and simple is cheaper also, and that is the way to go.

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Prosthetic Services in Conflict Zones Mr Claude Tardif Introduction by Mr Clemens Nathan Our next distinguished presenter is Claude Tardif.

It’s rather good that Claude has come here as he is on the Steering Committee of the War Victims Fund (one of the biggest funds in the world) which tries to help with the problems that Mr Laperrière has spoken about. Mr Tardif is working for the International Committee of the Red Cross (ICRC) in Geneva. He is currently the Head of its Physical Rehabilitation Programme and a member of the board of its Special Fund for the Disabled. He started work in the humanitarian field in 1997 after a clinical and academic career in Canada. I am extremely pleased that he was able to come to our conference because, like our previous speaker Mr Laperrière, he is flying around the world the whole time and we welcome him here today.

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Prosthetic Services in Conflict Zones by Mr Claude Tardif I will discuss the physical rehabilitation programme that we, the International Committee of the Red Cross (the ICRC), run all over the world. The ICRC is a humanitarian, impartial and independent organisation. We are not an NGO; we are an international organisation with the same status as the UN. We have a mandate that we have been given by the international community that signed the Geneva Convention, and the Geneva Convention makes the rules of conflict. You may think there are no rules where there is a war but there are. Many countries have signed this convention and they are meant to protect civilians, but civilians are the most frequent victims of conflict – not the military. In countries like Afghanistan or Iraq at the 52

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moment, although many UK soldiers have sadly been killed in these two countries, the number of Afghani or Iraqi people is much, much bigger and we don’t talk about it.

Everyday in Iraq there are hundreds of people who die or are injured in the conflict, through bombs or landmines and the like. In the beginning it featured in the main news, but now it is at the bottom of the pages of the newspapers – just a few lines: ‘Bombs in Baghdad, 200 people injured’. It’s a pity because there is a lot of conflict around this world that we do not talk about anymore – Sri Lanka and Congo, for example. I could make a long list of conflicts that we do not always hear about, but they are always there.

At this moment, in 2008, we are working in 26 countries and support 87 centres. Rehabilitation is not only about providing medical care, prosthetics, orthotics, mobility aids and physical therapy. It is a process which aims to diminish all that is limiting a person as a consequence of their disability. It is a process where different interventions may occur at different times, but if it is carried out properly then the person will be able to play an active role in their society. Of course, it is much easier to do that in the UK or Canada or Switzerland than in Uganda or Iraq or Afghanistan, where the society has collapsed so the system is not functioning.

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In Cambodia after the Khmer Rouge left in 1979 and the Vietnamese came in, only one remaining doctor surfaced in the whole country – a seemingly impossible starting point. Physical rehabilitation centres did not exist, hospitals were being built but there was nothing inside the buildings and no staff to work there. So it was very difficult to make a start, but if you don’t start then it will never happen. Now there is a network of eleven centres within the country and a school of prosthetics which is recognised by ISPO, there are trained personnel in physical therapy and P&O; it is not perfect but people are receiving services. At an estimate they are probably making 15-20,000 prosthetics per year.

Everything is done inside Cambodia: the components are manufactured there and distributed to the centres. The system is functioning; it has been a very long process but it is working. Physical rehabilitation is an important part but it is not the only element. It is usually the first stage because if you enable people to be mobile they can get to school, have an education, go to work, and participate as a normal member of society.

In all countries it is the responsibility of the state to take care of its own population. There are many, many conventions that have been signed by countries into their own constitutions, and there is a lot of emphasis on the responsibilities of the state for providing care. The UN 54

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convention covering the rights of someone with a disability is a new one, and one of the few human rights conventions that has been adopted by the UN in the last 25 years. This specially designed convention clearly asserts that the state has the responsibility to ensure that its people have access to a rehabilitation process, thereby allowing them to reintegrate into society. The convention on cluster munitions, which due to be signed in December 2008 in Oslo, will have a similar impact to the landmines convention when it imposed a ban on landmines. There is also a convention on certain conventional weapons or ‘CWs’.

These conventions are providing a framework within which different weapons in a conflict or non-conflict situation may or may not be used and are quite limiting; most of the time they say that civilians have to be protected from the results of their usage. But in the case of landmines for example, statistically 80% of people injured are civilians.

They are not the military, because the military know where they are – they have put them there. But the civilians move from one point to another and walk on the landmines; and it makes no difference whether it is a man, a woman or a child– the first one to walk on it will be the victim of it exploding.

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The challenge is working in a country where everything is destroyed, civilisation has collapsed, there is no society. In Angola the conflict ended in 2002 with the death of Savimbi, the head of the rebel movement UNITA. The defeat of UNITA left a group of young people who only knew about shooting Kalashnikovs and rockets, because they had been surviving in the bush for 30 years. Just how do these people return to society? For them, solving a problem became shooting first and looking second: there were guns everywhere. But the situation in Angola is better now; fortunately it is a rich country with large quantities of petrol and diamonds, although the money is not always put to good use. At least if money is there some things can be achieved. But it is a challenge in a country with no money available.

In the UK, I heard a presentation on the National Health Service (NHS) that seemed to be quite complicated.

There were a lot of procedures trying to make the user the centre of the services, and to ensure quality. It is quite a challenge, but fortunately the money is available to fund the services, so the system functions. Imagine trying to achieve the same in a country where there are no personnel, no facilities, no money and yet something needs to be put in place, because all the people cannot be brought to Geneva or the UK to be treated. A solution has to be found whereby they can be treated in their own country.

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Then there is the challenge of working in a situation of conflict and violence, which will have a direct effect on the general health of the population. There are lots of injuries that are a direct result of the conflicts caused by bombs, guns, grenades and landmines. Then there are those who became disabled because of the collapse of the health system. There is no campaign for vaccination. The UK has seen polio, but those patients must now be around 65, 70 years old and it is in the past; where we work we still see children with polio because there is no vaccination campaign. The security is so bad that nobody wants to get the kit and go into the bush to vaccinate everybody. If you had a fracture in the UK you would go to hospital, have a cast made, go home for a few months, perhaps have some physical therapy, have the cast removed and everything would be perfect again. In some of these countries there may not even be a hospital. So a bad fracture in most cases would result in an amputation.

There is also a direct effect on the health system if the society itself is collapsing. In a country like Cambodia, for example, after 35-37 years of conflict society virtually no longer existed; people who had fled the country and returned left again because they did not recognise the society they had left many years before. In that type of situation the future is tomorrow and your community is your family, but 57

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it is all extremely difficult. In health matters, the link between services and needs was reversed: as the needs increased, the facilities were decreasing. There was a point at which, if you were to visit Cambodia as a tourist, you would see amputees everywhere you went. I think the population of Cambodia is seven million people and they estimate about 45,000 people are amputees as a result of landmines.

Add to that road accidents and the other causes and you have a huge number.

When a country is in a conflict, it will be paying out a great deal for guns, ammunition, the military’s salaries and food – and that is taking a huge amount of money from its resources. Even after the conflict is over a large army and a substantial police force is likely to remain and most of the country’s budget will be going into that area; only a small percentage will be available for education and health and the result for years afterwards is a society in difficulty.

If you use a prosthesis you will usually need it for the rest of your life. It is not only necessary to provide the prosthesis, a system has to be put in place whereby the person can have it repaired or replaced if needed – children need them changed often as they grow. The establishment of these services takes a long time and a long-term commitment. People need training, facilities need to be built, and time has to be invested. Training people takes a 58

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minimum of three years or so, and the need is increasing. All over the world there is a lack of facilities. Many countries have very few personnel and those few are located in the main city, while those who need the services are located in the villages; transportation to the capital is a problem as it is expensive and the cost of fuel is increasing. It is very difficult for many to access even minimal services because of poverty.

As has been mentioned, the needs are much more than medical and it may be the link between medical rehabilitation and other aspects of the society that is critical.

So I am not pleased with the fact that we are sometimes obliged to deal only with the medical aspects of rehabilitation. However, if we can provide the means to walk then it allows people to do something else as a result.

A technology using polypropylene, which is recyclable, was developed by the ICRC many years ago, that has been recognised by ISPO as one of the most advanced steps towards providing appropriate prosthetic services in developing countries. We received a prize for this in 2000 at the Hong Kong World Congress. The cost for the prosthetic component would be approximately 50 Swiss Francs, which is about 30 euros. So it is quite low cost.

Disabled people are sometimes denied education and health care because of their condition. It is seen as a kind of stigma in some societies, and because of lack of access to 59

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education and health services their poverty is perpetuated.

The poor often cannot pay for health services and limited or no access to them may result in new or worsening disabilities. These interacting vicious circles are very difficult to break out of in a penniless society. Twenty years ago people with a disability would rarely be seen in public in many countries. They would not be in professional roles, or as a part of society. Now things have changed, but it took time. Cambodia is still in a position where most of the developed countries were 20 or 35 years ago. Taking care of its people with a disability is probably the country’s lowest priority. They do not want to see it; they just forget about it and prioritise something else. Access to rehabilitation services is a human rights requirement, not a charitable issue. I am not doing this job because I am a very charitable person. I do it because I believe that these people have the right to access these types of services at the same level that I would find when working in Canada.

One of the main challenges in countries like Afghanistan concerns accessibility. In order to have access the people need to be able to leave their houses and travel.

In a country like Afghanistan which is in conflict, someone can be in the wrong place at the wrong time and never get back home; in Iraq it is same. We have to find a solution whereby a small centre exists as close to the people who 60

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need it as possible We cannot put a centre nearby everybody but we can put one within a reasonable distance, and there must be enough for all sections of the population. We may pay for transportation or carry it out ourselves. In all the centres we support in Afghanistan there is a section for men and a section for women; the two are exactly the same but everything needs to be duplicated, two sets of trained P&O technicians, physical therapists and doctors in order to make the service fully available in both. We may have to make sure that all those who need to can enter a centre, because in some countries if you arrive with a wheelchair you cannot enter the building even if you are entitled to the service.

In Columbia I saw people who would never go to the centre because they would be accused of supporting ‘the other side’ and they might be arrested by the police or by the ‘other side’. So they stay at home and wait until things get better. The number of centres is very low. To travel from your village to the main city is always difficult and expensive, so much so that people cannot access the services even though they are provided free-of-charge to them. (By saying ‘free-of-charge’ someone still has to pay for it; I think ‘subsidised’ is a better term.) It is very difficult in this type of context to ensure follow-up because the user may have moved, some disappear, and sometimes you cannot because of the security and political situation – however much you 61

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try. This is why in some cases we are reluctant to give treatment, because we know that close follow-up is essential and would be very difficult to implement.

Then there’s the question of quality. Services have to be provided with what we believe is reasonable quality. We all know what constitutes quality prosthetics, there are guidelines. All these people have the right to this level of care and whether they are in Pakistan, Afghanistan or elsewhere, this needs trained personnel. Expatriates cannot always be sent to provide the services. In the long-term this is not beneficial; it is better to train the people who are already there, which enables the service to become more and more self-sufficient. We work on increasing accessibility, improving quality and ensuring that the service will still function even if we stop supporting them. We try to be nondiscriminating because it is the needs that are relevant, whether you walk on a landmine or are hit by a car. We try to work for everybody.

In Darfur and Sudan we use the ICRC aeroplane because of security problems. We pick up the people and bring them back to the centre. It is very expensive but for the moment it is the only way for them to have assisted services. The Red Cross have a campaign whereby military vehicles display an emblem which signifies a protected ambulance (not seen very often in the UK). It cannot be used 62

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everywhere. The countries who signed the Geneva Convention agreed that nobody should attack a vehicle or building bearing this emblem (a red cross). It is supposed to protect, but it does not always function effectively because some of my colleagues have been killed in the field even under Red Cross Ambulance protection. That is a little Red Cross history; it is like a large family.

Economic accessibility is an important issue. People in some of these countries have no money, no means at all or very little, and services are not free. Somebody has to pay for them; so we subsidise the cost of the services. We may pay for everything and then the service user comes to the building and everything is already paid for, or we may reimburse the centre for the cost of their services afterwards.

But it is not free, we are just making sure that cost will not stop accessibility to the services; not only do we pay for the services, we also provide the materials and equipment – everything. It is quite a lot of money, but you need that in a country like Afghanistan where we see more than 60,000 people per year. Minimum costs of services cannot be avoided. Equipment and materials cost money, as do personnel to provide the services. Everything’s at a cost. So in assessing the quality of services we make sure the personnel are trained; we give scholarships, and we run our own training programmes, and we provide scholarships for people to be trained abroad.

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We make sure that therapy is part of the service, because in many countries there is a P&O centre but no therapy is included – so people receive the prosthesis, but how they use it is their problem. Instead we try to ensure that everything is done in such a way that people have access to follow-up treatment. We sometimes take vehicles and move from village to village to follow-up those who are receiving services to make basic repairs and check the technology is appropriate for the context. Some prostheses may be of good quality and expensive but not made to resist, for example, humidity, dust or sand, which is no use if the person who needs it is to be working in the middle of the desert, or by the sea. There may be sand everywhere, so the beautiful new foot that you have will last only one week because you walk barefooted; you may be better off with a simpler prosthesis. It is all about quality, personal care. Long term service functioning is vital, so we must aim to work within a national system with our services embedded in it – be it the health system, social system or otherwise.

To conclude, the needs of people with disability go far beyond the medical and this is important to remember: the problem of limb loss is not solved because you are providing simple prostheses. These people need to have access to much more support in order to rehabilitate into society. Access to rehabilitation is a human rights issue, 64

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because they have the right to play an active role in their society. Access to rehabilitation also has to be made available for the long term: it is not only a case of providing them with functioning prostheses; it is ensuring that they can have their prostheses maintained, repaired or replaced throughout the rest of their lives.

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A Clinician’s Perspective Dr Robin Luff Introduction by Mr Clemens Nathan I just want to tell you how grateful I am that Dr Robin Luff is with us today. He is a great expert on rehabilitation medicine, which has been his life’s work. He is also very active in ISPO UK especially on the international level, and I sincerely hope that with his expertise something new can come to light which can be of benefit to us all.

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A Clinician’s Perspective by Dr Robin Luff I would like to thank my colleagues in the ISPO, UK National Members Society for volunteering me to do this.

It is an issue that as our previous speaker, André Laperrière, has suggested we should approach with some humility, and I will explain why as I go through my presentation which is from a clinician’s perspective. I do so representing ISPO and my medical professional body, the British Society of Rehabilitation Medicine, but I would make the point that the views are my own. They do not represent the official stated views of either organisation.

We have had some discussions about ISPO. It is a worldwide organisation; it is multi-disciplinary so it covers all those with an interest in prosthetics and orthotics, and 68

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indeed other sorts of rehabilitation technology. It aims for academic excellence and promotes research; it aims for clinical excellence and promotes best practice. It is also closely linked with standard-setting, both for educational content and for the status of training schools, as Claude Tardiff mentioned earlier. It promotes the exchange of information at world congress level, at regional satellite conferences and at the many consensus conferences. I am pleased to be able to present the views of a member of ISPO in terms of prosthetic services in relation to the survivors of human rights abuse and indeed what happens in zones of conflict.

Now why me? Well I was volunteered and I am honoured to be able to accept. I am a consultant in rehabilitation medicine, and have been for 24 years. I have a special interest both in the use of orthotics and in amputee care. I am involved in research, training and service development. Although I have examined a number of national services in prosthetic provision and worked in my clinics with survivors of atrocities from many cultures, I have no direct work experience of providing services in such cultures. So I do approach the subject with a great deal of humility because I am aware that we have some real experts in the field here. I have therefore had to think carefully about what to present today. I have taken the viewpoint that 69

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the way to approach an outsider’s clinical perspective on this issue is to think about amputees and the situations in which they find themselves.

It is important to understand the characteristics of the amputee population. They are all ages, and in terms of zones of conflict of course there will be winners and losers.

There will be people from both sides, or indeed many sides sometimes. They will have varying prosthetic needs, but a lifelong need for care. They may have suffered additional trauma as AndrÊ mentioned earlier. They may also have intercurrent disease. They will have emotional, psychological and psychiatric needs over and above their physical impairments. There are therefore some possible pitfalls when trying to introduce a prosthetic service into a zone of conflict or human rights abuse. It is possible to misjudge the need, underestimate, overestimate, get the impairments wrong. It is possible to impose the wrong or inappropriate model of care. We should not, from a developed or industrialised nation’s perspective, inflict on a different culture our views of what prosthetic services should be.

The risk is to provide a uni-disciplinary approach.

That is, I am a prosthesist; I make artificial legs; I will give you a service. There is much more to caring for amputees than that. It is possible to choose inappropriate technology.

Those of you who attended the ISPO conference saw some 70

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wonderful pieces of technology, but these may be totally inappropriate for the sorts of environments in which one is trying to help as many people as possible, and as quickly as possible. The other error, I believe, when considering introducing a new prosthetic service from outside, is a lack of commitment to providing the long-term support which is of course essential because of the life-long needs of the individuals concerned. Any service that is introduced to establish or re-establish a prosthetic service when there has been a breakdown of society has to either stay there to provide what is required, or arrange for the local transfer of skills. Plus it must support those healthcare professionals to develop their skills over what may be a number of years.

What can one do in considering viewpoints on this difficult question? I have taken the view that one can start by focusing on the impaired individuals, who may of course have a family of survivors around them. They will have a non-impaired population around them. They may live in a country that has both government and opposition. There may be other governmental or non-governmental organisational interests. They may well be working with, or perhaps have been worked on by, self-appointed expert charities and NGOs. There may be well-intentioned volunteers trying to help and also, very importantly, commercial prosthetic interests. Let us address these one by one.

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Firstly, the impaired individual. There will be a sense of gratitude: someone is doing something for me, someone is helping me to return to normality. A sense of restoration: ‘I am now whole again, I can therefore function within my family. I can re-adopt my role in society, return to work, whatever it might be.’ This is all part of the re-establishment of a functional society. ‘I therefore gain or regain my selfesteem. On the other hand, why treat me rather than everybody else? Why treat me rather than someone who has lost a limb from an accident rather than mutilation? I have this nice new leg but I still cannot work! I need to wade in the river! I cannot kneel down to pray! It was good, but it does not fit any more!’ And this is very important: ‘…instead I wished they had given me…’ We cannot assume that an amputee wants to have a prosthesis. There may be other things that would make much more of a difference to their care and sense of well-being. There are also problems of continuity – the clinic has closed, there are no more spare parts, maybe they cannot get there anyway.

Many of the same views apply to the family of survivors surrounding our indexed individual. On the one hand the person can walk, work, is whole again, therefore prospects are improved. This can be especially important for female amputees for whom limb loss may well be a considerable bar to marriage. I am fascinated by requests 72

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from the non-industrialised world to try to improve, as it were, marriage prospects by prosthetic means. More generally, the survivors have become productive again, they are back at work, doing good things for family and society, the family structure has returned to normal, the husband is once more head of the household and so forth. Therefore the family wealth is increasing, but he is still not right, still not whole. He is not working properly, he still has poor prospects in society; nothing fits anymore, it is too expensive to maintain, ‘we cannot get there anyway’, ‘Instead we wish they had given us…’ the family may feel that the prosthesis is not the most desirable thing for them to have.

Now what about the population as a whole? It is good to see people restored, to have them back in the community, to have them productive. It helps with community pride; someone is helping their impaired individuals – both in the sense of the individual and because they have a nice new clinic, always good for the community.

It helps to reduce the sense of guilt. Once the conflict has been resolved you have both the guilty and the victims present in the same society. So some way in which guilt can be seen to be eased may be constructive for the whole of society. But then society may say, ‘Why not help all our amputees, not just those who have had amputation as a 73

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result of mutilation?’ ‘How long is the clinic going to stay there anyway?’ ‘When will they start to charge us for the services? And if they do, can we afford it?’ Of course, that nice new clinic could be used for something quite different, something more constructive for the community: ‘Instead, we wish they had given us something quite different.’ So my message from that point of view is not that prosthetic services are unimportant but that, in considering what to do to help in the presence of survivors of conflict and human rights abuse, we need to think very carefully about how best we use the resources available.

Politically this can be a nightmare. A new service like this may be welcomed or rejected for different reasons.

Different political elements in a country may have quite different views about the service. There may well be a government view which is diametrically different from that of the opposition. Local NGOs may be very welcoming, or they may feel that they have been displaced. There may be issues about sub-populations based on ethnic grounds. There may be both opposition and welcoming approaches from local and international charities, philanthropic individuals and others.

Commercial interests also may look at a new service from differing perspectives. It may be seen to be a philanthropic opportunity. I am particularly interested in 74

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this concept of the Clinton Programme in terms of ways in which we can persuade our western producers of prosthetics to consider supporting developing world prosthetic industries and clinical services. It may therefore be seen to be a commercial opportunity and/or provide welcome competition to an existing commercial service. But it could, of course, be seen as unwelcome competition. It could be seen as a commercial threat. It may result in the withdrawal of an existing prosthetic service. If a company feels commercially threatened, they will not need much of an excuse to just pack up their bags and leave. The net result, therefore, of an inopportune introduction of a new service may be the loss of what was there to begin with.

I have taken the enormous liberty of making some suggestions as to what should be done to establish a prosthetic service in the presence of conflict or human rights abuse. I think the most important thing to do is to obtain an understanding of the local culture. We cannot, in my view, make assumptions about what is needed. It is then possible to obtain a balanced view of the extent and types of services required. That should involve consultation with local health services, local NGOs and of course with the central government. All of these things assume that the conflict zone has been stabilised and it is therefore safe to undertake these preparatory investigations.

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What therefore are the principles for establishing an amputee care service in this sort of situation? It needs to be explicitly targeted. If it is going to be for human right’s abuse survivors then everybody has to understand that is what it is intended to do, that it is not going to be an amputee care service for all the population. Now you can argue whether that’s the right or the wrong thing to do, but I believe if this is going to be for reparation it has to be explicitly targeted and stated as such.

It needs to be culturally appropriate and I’m well aware of the excellent work that ICRC have done on their propylene prosthetic system, it’s a wonderful piece of work.

I was interested to note on the slides Claude showed that they’ve all got white polypropylene limbs. Now it is possible to get different colours of polypropylene, why isn’t it possible therefore to use something like the appropriate colour of polypropylene when you’re making culturally appropriate prostheses. I had this argument too with my own staff about colour systems.

By seeking advice and information in preparation I believe it is possible to make the development of a new service politically welcome.. and I could foresee that a service that is not politically welcome could be extremely difficult to maintain. It also needs to be affordable, I really liked Claude’s view that there’s no such thing as a free 76

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lunch. You cannot provide a free service, you can provide a free service at the point of delivery which would be appropriate, but someone has to pay for the setting up costs, the running costs, the training costs and so forth and you need to make sure that you can afford to do it, that you do have the resources to set up a properly functional service.

And I think it must be designed for effectiveness, and efficacy in this sense arises from understanding properly what the population needs are, and it should be designed for the long-term, to support the life-long needs of the amputees and to support the needs of the staff who you will hope to train locally and who will continue to provide the relevant forms of care, and I really liked the term an embedded service, I thought that was very well put.

Mr Chairman I have taken some liberties with my brief and liberties with my lack of seniority in the presence of this august panel of speakers. I thank you for your attention and I thank you for the invitation.

Mr Clemens Nathan: Thank you indeed Dr Luff for your excellent presentation, we are very grateful to you.

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Question from audience: When you talk about taking into account the views of the local population, this might well be an ostracised group of society where the majority cares very little for them and would put them at the bottom of any priority list, were we to come along with a pot of money and suggest they spend it on something. That’s likely to occur in a number of situations. Where do you place this on the priority list of how to develop a service within a community, and how do you engage a community who may view it as unnecessary?

Dr Robin Luff: As I pointed out, some victims wonder ‘Why me, or why treat him rather than somebody else?’ That is why I clearly stated that if you are going to provide a community service as part of reparation, it has to be explicitly such.

Now I have to say that I wasn’t aware until this afternoon that, to fully understand the needs of that group of people, it might require quite an extensive investigation into not just the towns and cities but the hinterland, to find the group of people who you want to target. I think you are absolutely right; these people are disenfranchised in many ways because of their impairments. Part of understanding what is necessary locally involves trying to determine how to bring 78

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about reintegration of the individuals, having undertaken as much restoration as you are able. I think that is the most important message. I believe if you are going to do this, the first part of the project is to evaluate what the project needs to achieve, rather than just decide to launch a new prosthetics service. But I appreciate the point, it is a very good one to make and I fully admit that I am presenting this on the basis of theory rather than practice; but that’s what seems to me to be the starting point for this sort of initiative.

Mr Russell Woods (University of Salford): There seem to be two points here. It is an interesting way of looking at it, but in order to implement a policy it seems wholly impractical, because you could have other people coming along who have also had an amputation due to an accident; they might burn themselves and pretend they’ve lost it due to a landmine. Also it could cause problems within society because there will be people becoming jealous of those receiving the service when others are not. So in terms of reintegrating a broken society it just seems to be a case not of conflict, but of discontentment. If you are to be helping people and want to bring the community back to a normal way of life, then you need to be able to have a balanced system that everyone can benefit from.

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Dr Robin Luff: I agree with you entirely. My brief was to address reparations for survivors of abuse which is why I pointed out all the possible problems. There may be rejection or conflict about such a service at all levels from the individual up to government. That is also why I pointed out that if it was going to be carried out as reparation it would have to be explicitly stated as such. It would have to be politically acceptable. Unless you can achieve that you cannot do it in this way.

Mr Claude Tardif: Addressing the needs of one group may be the beginning of something bigger. From this it will become open to all, but you start the services somewhere, around needs that are apparent. Many countries have seen developments because of the landmines issue being featured in the news. There were organisations coming in officially to work for landmine victims that eventually provided services to everybody, even though the centre was opened due to the landmine issue. To serve only a small proportion of the population is very difficult, firstly to do the screening and secondly it is a kind of discrimination. People do not understand why they do not have access to the services.

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Dr Robin Luff: I think one of the possible ways through this would be to look at the whole amputee population when scoping the project and evaluating the needs. You may find that because of the nature of human rights abuse, you have an amputee population which is predominantly the result of human rights abuse – and the number from accidents is relatively small. So I return to the fact that you have to know the local needs. Then you scope your project accordingly.

Mr Claude Tardif: I totally agree. You cannot start something if you do not understand what you are coming into. It is not always easy, but you need to take the time to discuss all aspects with the population. You need the full support of the authorities, even if they do not put money in. They have to support you because, in the long term, they will be the one taking over all this. As you say, building a centre is a huge amount of money which could have been used for something else. That has to be explained: why this will be done and where.

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Dr Robin Luff: Perhaps the word I should have used is ‘ownership’.

The project would have to be owned by the government and the population you are going to treat. Unless you can achieve that before you start digging the foundations, I do not believe it will work.

Dr Fergus Jepson (Consultant in Rehabilitation Medicine,

Lancashire

Teaching

Hospitals

NHS

Foundation Trust): When I have spoken to others who have set up charities, including people from Médecins Sans Frontières, they have talked about getting a foot in the door, getting things established. No one secures all the money for the service prior to setting the service up. They secure some money for a service to assist a defined population group and then they try to build on that – although the ultimate aim of anything like that would be to treat everyone who needs it.

Mr Joe Wilkinson (University of Salford): When you start dealing with the amputee population it is for life, it is a long-term project. I was thinking about the projects which have been undertaken in Cambodia for example, and I know that schools have been set up to 82

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educate local people in how to provide the prosthetic and orthotic services. Was it always projected that it would be such a lengthy programme? It seems to me that in Cambodia the operations have been running for 25 years or thereabouts, so I was wondering what the viewpoint would be on that – the resources that would be required for that would be astronomical.

Mr Claude Tardif: When we started in Cambodia the budget needed was as big as it is for Afghanistan and Iraq at the moment.

For Afghanistan at the moment, just paying for the physical amputation project alone is costing 20 million Swiss francs!

That is a huge amount of money, and only for a particularly small activity of the ICRC. But in Cambodia the budget went down dramatically, mainly because of government input, and we don’t need expatriates at the same level as before, now that there are experienced staff. Some of them have made many more prostheses than I have seen in my life because they have so many people there. The government’s financial commitment is still low but it is linked with its financial capacity; it is not a rich government. They manage everything. Cambodia is now managing all the centres and providing all the services. There is a government supporting 83

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the implementation. The polypropylene components are produced within Cambodia, so all the polypropylene scrap discarded by the centre is sent back to the factory which produces the components.

I would say that the budget is now only 10% of what it was 10-15 years ago; at the beginning it was a big investment. You have to pay to have staff trained, it is $10,000 for students alone. You build a centre, and although cheaper than in the UK the construction still has to be paid for. The way we work in the ICRC is to say, ‘OK we are ready to pay for the infrastructure, the big investment; we’ll pay for the centre, we’ll train the staff. But we expect that in some years you will be able to take over the running costs such as electricity, water, salaries. We can continue to provide support for important materials that you would not find within the country.’ This is how you build the ownership of the programme.

In Afghanistan we are still paying for everything.

Iraq is the same. Iraq before the war was working perfectly!

Before the embargo there was a high level of education, no health problems, everyone was going to school. When the embargo began the health system and education started to collapse, because at the top level there was a problem with the population. Now we support twelve centres within the 84

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country and probably touch 30% of the needs of the country. Iraq has the possibility that in future when things get better they have the oil revenue, so that may help them to take over and develop the system. But it takes time.

What is rehabilitation? We train people but we also have to advocate and educate the government or the authority on what is ‘rehabilitation’. What the added value is of providing such care to your population to enable them to work again, to get them back into society. But this takes time. Fifteen years in Cambodia is often cited as an example because what that country has achieved in 15 years is quite impressive.

Mr Joe Wilkinson: There is a risk with that approach. As soon as you educate these folk, give them the qualification, they could then move sideways, or leave the country and go elsewhere.

Mr Claude Tardif: We have paid for a number of candidates to be trained as physiotherapists, prosthesists or orthotists.

Normally this is outside their own country. A few years ago I was confronted by my own organisation saying ‘Is this a good thing?’ We carried out a survey to find out how many remain in place in the country where they were intended to 85

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work. The outcome was 90-92%, so we said it was worth the risk. Only 8% of people disappear, and normally they do not disappear very far. For me it is a risk, but a risk that is worth taking.

Mr André Laperrière: I think it is important that we visualise the conceptual difference between reparation and assistance.

Reparation is normally linked to some form of formal justice, a mechanism to compensate for the harm X has done to Y. So in many situations when you raise the issue of reparation, it may be interpreted as threatening by the parties that have been involved in causing the harm in question. I am not saying that we should not speak of it, but my experience is that you only really get reparation when the demand comes from the roots, that is from the victims themselves. That won’t happen until they are empowered enough to ask for justice for themselves. So that’s why our approach is initially from the angle of assistance. We talk about assistance because it is not threatening, and we are assisting from many sides because they are victims and they need help. I find that when victims have overcome the trauma, medical difficulties and other problems, then they start asking for their rights. Then the formal reparation issue comes up.

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Coming back to the root of the question, I would have added one line to the list of entities to be consulted. Of course the victims, the amputees, should be consulted as to what they want, and their families if possible. But there is one other important instrument of consultation that we use extensively, and that is with traditional leaders. In Africa in particular this is a mechanism that is instrumental in many things. We do not have this structure any more in our societies, but there we still have it. Based on their cultural values they help very much in establishing what is fair and what is not, and they can be very powerful in transmitting the message as to what we are doing, what the purpose is and why we are doing something here and not there. That’s the facilitating factor. The obstacle is the reverse of that: the ethnic and religious differences. If you build a centre here then maybe you have to build a centre there also. Otherwise you may be accused of being pro this group and versus that group. Maybe the government or one of the groups will want to take the credit for what you are doing: ‘Their work is the fruit from our lobbying, we brought them here’. Then they use this for some political agenda that you may not support – hence the importance of relying on neutral and traditional and widely-respected entities that can alleviate this.

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My last point is the responsibility of the state. The state in my view is responsible for what happened before, and even more so for what happens in the future. Therefore they have to take-up their responsibilities and not just in words, but in action. It is important that this action is taken early on, while the iron is still hot so to speak. I recently attended a workshop with the Truth and Reconciliation Commission in Monrovia, and my advice to them was to secure from the government right at the start a certain percentage of governmental income to go into a special fund to assist the victims – even though for now it is more of a symbolic gesture because they do not have any money. But as the economy grows then the fund will grow, and you have secured the mechanism that will hopefully provide for a long time.

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Psychosocial, Research and Global Issues Professor Malcolm MacLachlan Introduction by Mr Clemens Nathan We are incredibly lucky to have our next speaker with us today. Professor MacLachlan is from the Centre for Global Health and School of Psychology at Trinity College, Dublin, and Professor of Disability and Development, Stellenbosch University in South Africa. He has worked in a lot of NGOs all over the world. He is one of the most eminent people we could have in his specialised field. I have much pleasure in calling on him to give his presentation.

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Psychosocial, Research and Global Issues by Professor Malcolm MacLachlan Thank you. My presentation is, fairly briefly, about coping with disability, and then about the strengthening of rehabilitation services particularly in Africa. I’ll describe a couple of projects that we have running at the moment, concluding with why I think this is a particularly good time for ISPO, the Clemens Nathan Research Centre and others to try to push this agenda on further.

One of the groups I am involved with is called the Dublin Psychprosthetics Group, ‘psychprosthetics’ being the study of the psychological aspects of prosthetic use, and of rehabilitative and enabling processes in conditions that require the use of prosthetic technology. So it is really looking at the person’s involvement, response to, ownership 90

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of and empowerment through prosthetic devices or broader rehabilitative processes. We have developed a set of measuring skills called the Trinity Amputation and Prosthesis Experience Skills (TAPES). The motivation was to acknowledge the importance of not just the physical-fit aspect of prosthetic work, but also the psychological-fit aspect. One of the world gold standards in looking at quality of life is the WHOQLM (World Health Organisation Quality of Life Measure) and I would not claim that the TAPES is nearly as well standardised or developed as the WHOQLM. But when we carried out studies comparing them we found that there is a very strong relationship between the two, and we would like to see the TAPES developed as a measure of quality of life, particularly for people with amputations.

We conducted a study with the co-operation of BLESMA (British Limbless Ex-Service Men’s Association) that followed up a group of people who, on average, had lived with their limb loss for 43 years, the majority of them having lost limbs during the Second World War. We wanted to look at a variety of measures including their experience of anxiety and depression many years later and, using the ‘Impact of Events’ scale, their experience of intrusion.

Intrusion is that experience whereby you may be talking along a certain line of thought and then other ideas in your 91

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mind impose themselves on your thinking. They intrude on your consciousness; it is not that you are consciously dwelling on them but they keep interrupting. Often the things that people talk about with post-traumatic stress disorder are intrusive experiences. From a psychological point of view, we think that patterns of coping are important in general and we assessed three main patterns in relation to their amputations: problem solving, seeking social support and avoidance, using another scale called the ‘Coping Strategy Indicator’. We also had a group of variables we call disability variables, such as level and type of amputation, the reasons for it (traumatic or peripheral vascular), age, and time lapse.

We asked ‘What predicts the best range of outcomes?’ We developed a model whereby we put the disability variables into the equation and we then added in the coping measures. Basically, the result proved to be that the disability-related factors significantly predict the proportion of people who are going to develop anxiety.

When you further add in the coping patterns, accuracy in predicting who is likely to become anxious improves further. So, the basic information about disability is very important in identifying who will cope well or not, but in addition the way in which they think about their amputations is important. The same applies for depression and also intrusions.

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When we look at the outcome measures on the TAPES, there are similar trends. The disability-related variables are important, but people’s coping responses add significantly to their adjustment and to their limitations.

But, strangely perhaps, overall social adjustment in this large group of over 700 individuals was not predicted by disability variables, like the type of amputation, the time since amputation and their age – yet their coping styles did predict it. In summary, I am making the general point that it is important to have very basic physical characteristics, but it is also important to have basic psychological characteristics to predict how people will respond to their amputation experience.

I often feel I live in two worlds At the recent ISPO conference people from our group presented a repertory grid study using very high-tech prosthetic devices. We are very interested in that sort of approach but are aware of the difficulties in practice in health services in well-off countries – never mind in much poorer countries. Within Africa technical resources are a major difficulty, along with human resources and the management of those resources. I want to focus particularly on aspects such as how to hold onto people and what sort of training they most need to provide a service.

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The Centre for Global Health where I work has an area of specialisation called Human Resources for Health.

We particularly work with mid-level cadres, groups of people who are trained to do professional tasks but not to the level that people would be in western countries.

Generally they are trained in a much more narrowlyfocused way. So we are trying to identify specific skills to deliver a service, and train people to perform those skills very effectively. I know that for instance when we lived in Malawi, given that we were based near Manchester, there were more Malawian doctors in Manchester than there were in Malawi because they came to Manchester to do their training, amongst other places. So, in our view training people and giving them very desirable and internationallymobile qualifications in many areas is quite problematic, contrary to some interesting figures mentioned earlier. We believe there is a very good human resource argument for training people and giving them qualifications whereby they cannot leave, they cannot escape as it were. In Ethiopia where we have been doing some work, we are trying to develop a system whereby people start off on this much more restricted level of qualification and work up higher, and can cut off wherever they wish or go on to qualify as doctors and specialists within the system. These are all hugely-contested issues, not least by all the professions that we come from ourselves.

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Then there is the managing of resources. There are many big challenges in Africa relating to HIV, malaria, diarrhea and so on. For all of these there are very simple and effective treatments, whether it is oral rehydration, bed nets, condoms or the empowerment of women. So the solutions are quite often easy. How to implement them is much more difficult. I think the same sort of challenges confront the area of prosthetic provision. Very generally again, there is a sort of division, and this is perhaps a false dichotomy, between vertical and integrated services. For instance, in the area of trying to combat malaria there have been a lot of services set up which people call vertical because of their isolation from other services around. You get doctors and nurses focusing very narrowly on the eradication of malaria.

That went on for about 20 years, but increasingly people have realised that it is better to have a service that is more integrated with others.

In the case of physical rehabilitation, I know that one student I worked with in South Africa (and South Africa is a rich country compared to many of the countries we have been considering earlier) carried out some research on a facility in Durban working with people with spinal cord injury. This was a private rehabilitation service, and the people who came to this service were miners – their company having a health insurance policy. So these were 95

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pretty poor people, but because of the health insurance policy they got quite good rehabilitation services. After their three months of rehab they were then discharged into the community. A one year follow-up found a 100% mortality rate. It is pretty staggering, even apart from the horrendous human cost, purely from the health economics angle of very expensive rehabilitation services, to end up with such dreadful results. Many of those people were dying from simple things like urinary tract infections. Had there been better integration between basic public health and rehab services then everyone’s efforts would have been much more worthwhile.

The professional versus mid-level cadres comes in here, in terms of hospital versus community services. Who should be providing these services? Recently in a town called Mekelle in the north west of Ethiopia, which had developed a policy approved by everyone within local government, a donor came along and provided a 300-bed hospital. When I was there I was shown around the hospital, which had with lovely wards but no beds, no machinery, no staff, or anything else like that. If you value community-orientated services then I think that has great implications for the sort of people who are delivering the services. The supposed 90/10 rule, which I am sure is controversial in many places, is that 90% of the services can be provided through 96

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familiarity with 10% of the clinical training. Certainly within my own background in clinical psychology I can definitely say that is the case, that you need some very highly qualified people but very few of them. Many of the clinical cases that people have to treat require rather a small core of skills that people need to be proficient in.

The new Community-Based Rehabilitation (CBR) ethos is very important and people like the International Labour Organisation, WHO, the ICRC and various others are in the process of launching new guidelines to help CRB evolve even further in the direction of socially based rehabilitation. So we as health professionals can do so much, but we have also heard about the importance of providing economic opportunities – that having a limb fitted for instance is not an adequate solution to amputees’ problems, because these include earning an income, having esteem within their community and so on. The CRB ethos naturally lends itself to community services and probably also to the development of much stronger cadres of community-based rehabilitation workers.

Here as an example is a couple of other projects in which we are involved, and projects like these always have multiple partners. The Equitable study, which is just about to start, is looking at trying to increase access and equity. It basically recognises that services cannot hope to be equitable 97

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unless they are equally accessible to everybody. Access is often considered in terms of physical obstacles but there are also psychological and social barriers and, though often thought of as negative attitudes in the general community, these also exist within the health professions themselves. In many clinics, at least in African contexts with which I am more familiar, staff may have very negative attitudes and people with disabilities are literally put to the end of queues.

This particular study is looking at what the barriers are from the perspectives of the people with physical disabilities; not amputations alone but all sorts of physical disability. We are doing so in various different countries: in the Sudan because it has been ravaged by conflict, in Namibia because it has huge geographical challenges for people with disabilities, in Malawi because it is one of only two countries in Africa that has a ministry for people with disabilities, and in South Africa because it is an exceedingly rich country in African terms. One of the things we do as a centre is comparative multi-country studies, where we look at particular phenomena and try to draw up recommendations on a broad scale. We will be looking at policy regarding disability and what effect that seems to have in practice. We will be carrying out qualitative studies to understand people’s more personal experiences, and quantitative work in an epidemiological-type study of 2,000 people made up of 500 98

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people from four sites in each country, looking at different ethnic groups and different geographical areas. Basically as much variety as we can take into account.

Another study, which is underway, arose from our frustration that many clinicians and researchers would share: that you can carry out research and find that X is required, but X is never actually done. You try to make arguments for it happening and then in a sense, naively perhaps, you think that because you have the research evidence that is going to change things – but it does not necessarily do so. This study is again in four African countries, looking at what actually influences decisionmaking, within the context of documents called PRSPs (Poverty Reduction Strategy Papers) and SWPs (Sector Wide Programmes). PRSPs are effectively protocols that countries draw up to announce how they are going to focus on trying to alleviate poverty and develop their country over the next block of time, say five years. Unless your project is on the PRSP it is extremely difficult for external donors to give money to that country to get it supported. Sometimes within the world of disability in many low-income countries, when PRSPs are being developed (because there is an approved process for doing so) people come and talk to the disabled people’s organisations, clinicians and other 99

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interested parties, get a lot of input – and then leave. So they consult with disabled people, but in the end the PRSP often does not mention anything from them at all. The consultation is sometimes undertaken to look good, but although there is consultation in the end there is no representation.

This study is looking at who needs to be influenced and how. Certainly evidential factors will be one aspect, in terms especially of research evidence, but there are probably much more important things like whether you present your evidence on one page so the minister can quickly digest it, and whether you present it before or after the budget. I am not trying to trivialise it, but it is not sensible to do research yet not to consider what actually influences its implementation.

Finally, I bring to your attention a network that has been set up between the African Decade for Persons with Physical Disabilities, Stellenbosch University and Trinity College. It is important to say that we do not own this, we simply helped to get it going and there are many different organisations within it. It is mainly based at Stellenbosch University. The first conference was in Cape Town last year (2007) and there should be another conference there again in the coming year. The network is simply to bring together those who do not normally speak to each other. They are 100

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policy makers, clinicians, researchers, DPOs, NGOs and so on – to identify them at each conference, obtain their input and basically ask the question ‘So why aren't we able to join up our thinking more effectively?’

Why do something now and why might this be a good time? I have already mentioned the new communitybased rehabilitation (CBR) guidelines which take effect imminently. The next world health report is also going to focus on disability and rehabilitation. These are two major instruments further supported by the UN convention on the Rights of Persons with Disabilities. They give the international community real impetus to put forward an initiative such as the one that has been mooted here. I am aware I am in the UK and because the convention is now international law the UK government has an obligation to ensure that disability is addressed in all its international projects. It also has an obligation to ensure there are some specific projects that target disability.

I was at a meeting at DFID (the Department for International Development) a few months ago where they are developing a new policy to evaluate proposals whereby one third of the marks will be allocated to the ‘so what’ question. You might think that half the proposal should be the ‘so what’ question, but in the research world it is unusual to get researchers to actually think what their work 101

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is going to be used for and how they themselves are going to make sure it becomes useful. So this is a really an interesting shift for DFID. I think it lays out great opportunities in the area of prosthetics and orthotics and I hope that everyone here may be able to contribute to building it up.

Thank you.

Mr Clemens Nathan: Thank you very much for your extremely interesting paper. In the settling of claims and restitution for holocaust victims we always looked at the ultimate goal and then worked backwards, and we found that by doing so we got better results than starting the other way around. I think this applies to many areas of welfare: you need to know your ultimate objective and then work back, identifying what can be done in order to achieve this. It is not always easy to do, of course.

When the conference papers are published and widely circulated the outstanding content from our four presenters will be read and re-read by many people.

I now open the final discussion.

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Dr Robin Luff: The one thing that has stood out to me this afternoon is what this project might be attempting to do. I started from the viewpoint that I was given a brief about reparation and amputee care. What I hear from André though is that he would initially treat all amputees, and then work backwards to address the reparations. I think it is very important that as an outcome of this conference we are clear about what we are trying to achieve, because I would support André’s view about this and indeed the other views expressed in the audience. I do not believe you can separate out sub-populations if you are providing a specialist service like this. You would have to treat the whole population. I think the research centre would have to be clear on what it intended as the outcome of this project.

Dr David Abrahamson: My field is not prosthetics but I am very glad to have had the opportunity to learn something about it. I try to relate it to my professional work in psychiatry. It does strike me that what seems to be emerging here also emerges in mental health work – and leads to a lot of argument and controversy. That is, do you take a holistic view from the beginning , taking into account the whole person and their family and the society, or do you start with some particular 103

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problem of function and extend out from there? In a way it is related to the question, ‘do you start from an overall organisation where you’re trying to get all the pieces of the jigsaw put in place before you start, or do you start with one piece of the jigsaw and then build up from that?’ The same discussion developed here: do you have one service for everybody or pick out a particular group?

In the case of this conference we’re particularly looking at victims of human rights abuses. Do you focus on that particular group or do you look at everybody?

Similarly, do you plan in advance and have an idea of where you intend to end up, or do you develop something quite small, as André put it, be humble, and build up from that?

It seems to me that both approaches must be incorporated, but personally I feel apprehensive that attempting to join together all the pieces of the jigsaw early on, to have too broad an approach at the beginning, may have an inhibiting effect whereby you do not really start to do anything concrete and beneficial because you are concerned with getting it all right before you start. If you start small, then you can modify as you go along. Presumably it is a dynamic process. You learn as you go along, more people get involved and so on, and you change tack as necessary. But there has to be a dynamic process between what one might call the top-down and global approaches, and the bottom-up 104

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approach. The bottom-up approach is extremely important and the two somehow have to be brought together; they certainly should not be made enemies of each other – they should synergise one another.

Professor Malcolm MacLachlan: I would agree with David and I think you have to be humble. In a sense we have the answers to some of these issues. The idea of being able to get money for specific projects has been mentioned, and the problems of segregating or treating particularly well a certain group of individuals have been highlighted. One perhaps uses the leverage of saying a particular group needs funding, but the target at the end of the day is that this group of people is participating in society and fully included in it. If you treat them differently from others in that society, that is not going to happen. So I think you can make a very coherent argument for saying yes, here is a group of people that needs to be supported to achieve social inclusion and participation.

The way of doing so is to develop a service that is open to all people with similar sorts of problems whatever their cause, and to slowly, incrementally improve that service. I think the targeting of it is greatly problematic. In places like Sierra Leone there is a lot of tension between different NGOs in terms of whether you work with people who are war victims. In fact ‘tension’ is too mild a word.

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Mr Joe Wilkinson: There must be examples of this throughout the world where people have tried to introduce a service for a particular sector of the community, and there must be evidence as to the problems they have encountered. I know in Europe there are a number of countries where facilities have been brought about and established, and there have been areas of conflict. So we must have some evidence for that.

Mr Claude Tardif: The landmines issue was a good example of this. Ten years ago (1998) landmines got a lot of attention from everybody and then a lot of projects were started focusing on landmine survivors. Now nobody will start a project exclusively for landmine survivors, focusing on what caused the impairment. You cannot start something which is not part of a national system if you want it to continue after you stop providing the support, and you cannot run a programme specifically for landmine survivors, because their needs are predominantly the same as those who have suffered similar injuries but from other causes. The centre is there, you use the same equipment, you already have the trained personnel, the material is there, and I can tell you from personal experience that when working in the field it is impossible to refuse somebody. You cannot ask ‘What is 106

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the cause?’ and then turn them away! If you make the separation, then you cause another type of discrimination. It is impossible to apply, and this has now been agreed with the landmines convention.

In Canada the problem is if you became disabled following a working accident or car accident; then you are considered a ‘lucky’ disabled because the government is paying for everything. If you are born with a disability, then you have access to nothing. That is another form of discrimination.

Mr André Laperièrre: There is always some balance that you have to find from a number of different angles. You have a group of victims, victims of landmines for example, that suffer a specific type of injury and have specific needs. So the tendency is to try to tailor the treatment very much to the specific needs of this group. But the more you tailor treatment to this group the more you exclude everybody else. I will give you one example: a great school in the Congo where they were re-training former child soldiers – basically late teenagers getting fast educational and vocational training. I remember hearing other teenagers in the street saying if they had known they would have joined the rebels, because today they would be in the school!

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Other places had centres for victims of rape, and we further marginalise these poor women by doing so.

Somebody made a telling comparison, saying: “We have made a zoo out this place.” The donors go there to give themselves a good conscience but then we stigmatise these poor women even more. If I could just change one word in your proposal – to expand the services not to those who have the same ‘problem’, but to those who have the same ‘needs’. For example, we try to rehabilitate people after disability, and they need vocational training because they cannot do their previous occupation. So we are training shoemakers, because they cannot walk but they have their hands; and there may be other parts of the population that have similar vocational training needs. What we try to do is mix them together. Of course we are giving assistance to people beyond our original mandate, but I see this as one step towards their reintegration and it is helpful to these victims in that they are no more a victim, they are a normal person, a normal citizen, just like everyone else. That is why they are all learning this new trade together.

It is very necessary to factor in the environment and the family, but you cannot do everything at the same time; so the idea is to have an appropriately-sized population, complete in itself, so that you can address this smaller segment in a holistic manner. Once you manage to do that 108

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you can turn around to the government and say “This is what we manage to do for very little money, so how about you doing it because you are the state responsible for these people?� You can use these as examples to help motivate others. So instead of doing everything yourself, you demonstrate that it is possible. Then you will attract donors and the government to hopefully take up their responsibilities.

Mr Clemens Nathan: Thank you all and the conference is now closed.

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Clemens Nathan Research Centre Conference Series This book is one in a series of titles which brings the papers given at the Clemens Nathan Research Centre Conferences to a wider audience.

To date the Research Centre has helped in the publication of: Does God Believe in Human Rights?

Edited by Nazila Ghanea, Alan Stephens and Raphael Walden Leiden: Martinus Nijhoff, 2007 Terrorism and Human Rights London: CN Research Publications, 2007 Foreign Policy and Human Rights London: CN Research Publications, 2007

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The Clemens Nathan Research Centre is an organisation dedicated to the promotion of international human rights. It is the research arm of the Consultative Council of Jewish Organisations, a human rights NGO with consultative status at the United Nations, founded in 1946 by the Nobel Prize Laureate Rene Cassin. Its constituent organisations are the Anglo-Jewish Association and the Alliance Israelite Universelle. It is named after Clemens Nathan, who is also its first chairman. The activities of both organisations have included holding lectures and conferences, and sponsoring books on human rights.

Clemens Nathan Research Centre

ISBN: 978-1-905178-33-9

Reparations and Prosthetics

In November 2008, a group of distinguished speakers came together under the auspices of The Clemens Nathan Research Centre to present and discuss papers on the issue of Reparations for Victims of Human Rights Abuses and Prosthetic Services. This interdisciplinary panel brought extensive and varied expertise to bear on an important and timely subject. This book brings together all the conference papers and discussion in one accessible volume.

Reparations and Prosthetics

Conference papers from the Clemens Nathan Research Centre Reparations for Victims of Human Rights Abuses and Prosthetic Services