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THE MAGAZINE OF THE WORLD HEALTH ORGANIZATION

In this issue

Equal opportunities 3 Bengt Lindqvist Disability prevention and rehabilitation 4

Ann Goerdt Community-based rehabilitation 6

Tambo Comma Safeguards that prevent disabilities 8

Pierre Maurice Living with disability 10

Volker Krause What are the Abilympics? 11

Harry S.Y. Fang Morocco's friendly association 12

Nejla Essaafi Prostheses and orthoses in

developing countries 13 Anders Eklund Landmines: dragon's teeth 14

Alessandro Loretti Mental health: choice and dignity 16

Judi Chamberlin Intellectual disability 18

Peter Mittler Mental health in China 20

Yanfang Chen Aging well! 21 Alexandre Kalache

Cerebral palsy 22 Adriano Ferrari Childhood blindness 24 Clare Gilbert & Alien Foster Preventing nutritional blindness 26

Keith P. West Thailand's battle against

nutritional blindness 27 Vallop Thaineua, Emorn Wosantwisut & George A. Attig

The legacy of leprosy 28 Denis Daumerie Children's hearing endanrred 29 Andrew W. Smith, Juanita Hatcher & Ion Mac enzie

International action against deafness 30 Yosh Pal Kapur

World Health • 48th Year, No. 5 September-October 1995

IX ISSN 0043-8502 Correspondence should be addressed to the Editor, World Health Magazine, World Health Orgonizonon, (H.l211 Geneva 27, Switzerland, or direc~y to authors, whose addresses ore given at the end of each article.

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HEALTH

World Health is the official illustrated magazine of the World Health Organization. lt appears six nmes a year in English, French, Russian and Spanish, ond four nmes a year in Arabic and Forsi. The Arabic edinon is available from WHO's Regional Office for the Eastern Mediterranean, P.O. Box 1 517, Alexandria 21 511, Egypt. The Farsi edinon is obtainable from the Public Health Committee, Iron University Press, 85 Pork Avenue, Teheran 15875·4748, Iron. The Russian edinon con be obtained from "Medit>ino"

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World Health • 48th Yeor, No. 5, September-October 1995

Editorial

Equal opportunities

Mr Bengt Lindqvist, Special Rapporteur of the UN Commission for Social Development on Disability.

The United Nations' Rules on Equalization of Opportunities for Persons with Disabilities should be used to the

maximum by all organizations for the disabled.

"I

n all societies of the world there are still obstacles preventing persons with dis- abilities from exercising their rights and freedoms and making it difficult for them to participate fully in the activities of their societies. It is the responsibility of States to take appropriate action to remove such obstacles."

These two sentences figure in the introductory chapter of the United Nations' new instrument in the

disability field: Standard Rules on the Equalization of Opportunities for Persons with Disabilities. They contain a message of vital impor- tance because there is no country in the world- not even the most afflu- ent, democratic and welfare-oriented -that has reached a decent or reson- able level of participation for its citizens with disabilities. Many obstacles to participation still re- main, concerning such fundamental issues as human rights and freedom.

The United Nations' decision to draw up this new instrument fol- lowed an international debate where the disability community requested stronger leadership from the UN in implementing the policies and guidelines set forth in the 1982 World Programme of Action concerning Disabled Persons. Although there were some successes during the UN Decade of Disabled Persons, 1983-92, far too little was sustainable. More guidance was needed concerning how things could and should be done and about the crucial issue of responsibility.

The above quotation states clearly that it is the responsibility of States, i.e. governments, to take appropriate actions to remove the remaining obstacles. The 22 rules of the documel)t explain what govern- ments should do, what principles they should apply, and what mea- sures they should take in different fields in order to progress towards full participation in the disability field.

It is not easy to summarize an already concentrated document, but in brief:

• persons with disabilities are citizens like everybody else and therefore entitled to participate in the activities of their community;

3

• governments should create a legal base for measures in the disability field leading towards accessibility and participation, and should support and cooperate with organizations of disabled people;

• governments should integrate disability measures, based on laws or regulations aimed at achieving general accessibility- particularly in education, where the needs of disabled children and youths should be catered for in the general school system;

• governments should actively support opportunities for employment, and take concrete action to open up various sectors of society like family life, culture and recreation to disabled individuals.

The degree to which the Standard Rules are implemented by govern- ments is now being monitored by a Special Rapporteur appointed by the UN Secretary General, and it is obvious that this new instrument has revitalized the disability issue in many countries. Through taking part in elaborating and adopting the Rules, governments are strongly committed to take appropriate mea- sures. This is an opportunity that all organized movements of disabled people must grasp and use to the maximum. •

Mr Bengt Lindqvist is Special Rapporteur of the UN Commission for Social Development on Disability, Swedish Parliament, S-1 00 I 2 Stockholm, Sweden.

4 World Health • 48th Year, No. 5, September-october 1995

Disability prevention and rehabilitation

Ann Goerdt

Reduction of handicaps requires a great effort on the part of all sectors to promote changes in beliefs and attitudes which limit the activities of people with disabilities.

Primary prevention

Positive beliefs and attitudes can reduce enormously the social handicap of disabled people. The measures promoted for the prevention of diseases which cause disabilities include immunization, particularly against poliomyelitis, measles, rubella and tuberculosis;

prenatal care to ensure the healthy development and delivery of babies;

appropriate nutrition, especially iron,

A

lthough different countries are noting different patterns in the occurrence of disability, the number of children with disabilities appears to be on the increase. This may be because those children are surviving longer as a result of improved health care, or because the number of young people disabled through accidents or violence is increasing. The number of elderly people with disabilities may also be growing.

The occurrence of disability calls attention to the need for disability prevention, including rehabilitation.

WHO addresses this need by promot- ing a variety of prevention measures.

The terms impairment, disability and handicap are used as a reference for the primary, secondary and tertiary prevention measures which are related to disability (see diagram).

Primary prevention consists of the measures aimed at the prevention of diseases and injuries. Secondary prevention includes interventions which are used to treat diseases or injuries in order to prevent impair- ments. Tertiary prevention consists of a variety of measures aimed at eliminating or reducing impairments

or disabilities. Since handicaps result from the interaction between people with disabilities and their societies, a change in society is also needed in order to reduce or elimi- nate handicaps.

Primary Secondary Tertiary

prevention prevention prevention

1 ^{m ... ,.,} 1 6

... or iniury ... Impairment ... Disability ... Handicap

Definition of terms from the International Classification of Impairments, Disabilities and Handicaps (WHO, 1980). The current revision of this classification is scheduled for 1999 and is now being coordinated by the WHO Division of Mental Health.

• Impairment is an abnormality of psychological, physiological or anatomical structure or function. Impairments refer to organs.

Example: Paralysed muscles of the legs.

• Disability is the restricted ability to perform an activity. Disabilities refer to persons.

Example: Person cannot walk.

• Handicap is the restriction faced by a person with a disability in fulfilling normal roles due to social barriers. Handicaps refer to the interactions of people and their societies.

Example: Person cannot get a job because employers do not want employees who cannot walk.

World Health • 48th Year, No. 5, September-october 1995

s

A paralysed child being assessed for possible medical treatment. Polio immunization is one of the most efficient measures in preventing disability

iodine and vitamin A, for mothers and children; and sanitary measures to prevent eye diseases, such as infections and trachoma.

Injuries may result from inten- tional or unintentional acts and injury prevention has several aspects. One is education regarding measures which can be taken to prevent acts that cause injuries. A second is protection, which uses environmental or technical devices such as seat belts, helmets and air bags to prevent injuries. A third aspect is the promo- tion of safety as part of general health promotion policies, and this is being developed under WHO leadership.

Secondary prevention

When diseases or injuries occur, medical interventions are needed in order to prevent impairments, such as permanently paralysed muscles, damaged eyes or ears, or brain dysfunction. These interventions include the multidrug treatment of leprosy; the medical treatment of infectious diseases affecting the eye, ear, spinal cord and brain; provision of appropriate nutrients against malnutrition; and medical and other treatment for mental disorders.

Tertiary prevention

When impairments occur, they can be treated in order to prevent or to reduce disabilities, such as difficulty in seeing, hearing or walking.

Eyeglasses can greatly reduce, or even eliminate, difficulty in seeing; a hearing aid can reduce difficulty in hearing; and leg braces can reduce difficulty in walking.

When disabilities occur, measures aimed specifically at the limited function which a disabled person experiences can also be taken to reduce or to limit the progression of the disability. These are the mea- sures commonly referred to as reha- bilitation. Because they focus on the activities which people can or cannot do, they require their active partici- pation. The rehabilitation process may require a person to learn how to dress or feed; a new system for communication; a new method for moving around, perhaps using a wheelchair; or new methods for organizing and carrying out daily activities.

Addressing the functional limita- tions of disabled people may also reduce the handicaps confronting them in their interactions with society. For example, if a person with paralysed legs can learn to walk with braces and crutches, he or she will have a far greater chance of being accepted by other people at school or at work. However, only treating disabilities is not sufficient to reduce handicaps. Societal attitudes must also change so that people with disabilities have

increased opportunities to participate in the same educational, work and social activities as other people in their communities.

lntersectoral collaboratiofl

The prevention of disabilities is often viewed as the responsibility of the health sector, but for tertiary preven- tion and even for primary and secondary prevention other sectors are needed. Thus, safety measures, sanitation and adequate food supply cannot be provided by the health sector alone. Special education and training for skills needed to produce an income are part of the rehabilita- tion process, and are provided by the education, social or labour sector.

Reduction of handicaps requires a great effort on the part of all sectors to promote changes in beliefs and attitudes which limit the activities of people with disabilities.

WHO promotes an integrated approach to preventing disabilities by including all promotive, preven- tive, curative and rehabilitative care in primary health care. Integrated health services can strengthen dis- ability prevention by keeping health care personnel at district and sub- district level well informed about all aspects of disability prevention, including rehabilitation. In addition, the health sector can actively partici- pate in intersectoral efforts to provide living conditions which reduce the

risk of diseases and injuries, address

the needs of people with impairments and disabilities through community- based rehabilitation, and ensure their full integration in society. •

Or Ann Goerdt was formerly with WHO's Rehabilitation Unit and is now working as a Rehabilitation Consultant. Her address is 145 East 27th Street, New York, NY 1 00 16, USA

6 World Health • 48th Yeor, No. 5, September-October 1995

Community-based rehabilitation

Tambo Camara

T

he 1980s saw the introduction on a global scale of a new ap- proach to rehabilitation of the disabled-community-based rehabil- itation (CBR)- and at the same time the spread of organizations for the disabled. Both these concepts had as their end-product the promotion of equal rights for disabled people and their full integration into every aspect of human society.

The World Organization for Disabled Persons aims at the opening up of society to all, with more egali- tarian participation, in both economic and political terms, in every facet of society. In this process, all associ- ated organizations concern them- selves with the ways in which this development can best encourage the disabled to participate while promot- ing recognition and respect for their human rights. This can only be guaranteed if disabled people, through their organizations, demand and obtain the means for a resolution of their problems.

Generally speaking, disabled people tend to have been more or less excluded from the normal life of the community as a result of physical, social or psychological barriers erected, or at least accepted, by society. They were categorized as incapable because people paid more attention to their limitations than to their potential. In developing coun- tries, particularly in Africa, this tendency has changed little, since the need to prepare them for full partici- pation as human beings and citizens rarely figures in national develop- ment plans. They have little access to services or to decision-making that relates to their own future; they are usually poor, living at the bottom of the social scale and taking little or no part in community production and consumption. However, in the last 20 years they have realized that they

Tambo Camara.

need to develop their own potential to the maximum, to take control of decisions that affect them and -in organized groups -to fight for change and obtain recognition and respect for their human rights.

As Rick Hansen, the instigator and main organizer of the conference Autonomy 92, phrased it: "Nobody can get ahead in life on their own, whatever their degree of autonomy or however they struggle to acquire it. We are social creatures and we have to work together in order to help each other." And indeed it is by running their organizations that disabled people have learnt to solve their problems through concerted action and cooperation with CBR programmes.

The role of organizations for

the disabled includes forming

pressure groups to work on

governments so that they

adopt national policies and

legislation favourable to the

development of community-

based rehabilitation. The

disabled, their families and the

community need to be made

aware of the advantages of

participating in rehabilitation

and social integration.

World Health • 48th Yem, No. 5, September-October 1995

After Alma-Ata

Community-based rehabilitation (CBR) is an innovative approach that was launched by WHO in the after- math of the Alma-Ata Conference on Primary Health Care in 1978. The aim was to enable developing coun- tries to offer essential services to as many disabled persons as possible, where they live, at a low cost and at a convenient time. What is original about it, compared with institutional rehabilitation, is the principle of participatory development where the beneficiaries are no longer objects but subjects and therefore agents for change. Moreover, it is global, multisectoral and decentralized, a positive factor in the community, offering to the disabled the chance and the responsibility to guide or even activate their own rehabilitation and social integration.

The strategy to bring this about combines the efforts of the disabled themselves, their families, the com- munity and the appropriate health, education, labour and social services while making the best use of local ' resources and experience. All this calls for a partnership that includes the state and the public and private sectors, which need to put all their ideas, resources and potential at the disposal of the others in order to aiTive at the common goal of a shared interest. However, despite the goodwill and good intentions of the organizations for the disabled, there are constraints of an economic, organizational or training nature which -particularly in developing countries-undercut the efficacy of what they bring to this partnership.

From the standpoint of the dis- abled themselves, financial arrange- ments ought to involve the state, the sponsors and especially the national body that looks after their interests.

A national CBR programme should involve a single national body which groups together all categories of the disabled, that is, a national federation of associations, rather than dealing only with specific associations.

Such a programme can offer support by setting up, equipping and

managing a permanent office which should be accessible and easy to find; training leaders in the democratic running of associ- ations for the disabled and also in the concepts and strategies of CBR; training managers capable of staging, following through and evaluating a development project; helping the leaders to achieve financial autonomy

7

so that they can devote their expertise and their time to the organization and to CBR; and aiTanging study visits and ex- changes to promote the open- mindedness and understanding that are vital to mutual aid and solidarity. The disabled should participate in the planning and

joint management of CBR at both Integrating disabled students in schools is o good start for community rehabilitation.

the national and local levels in collaboration with their partners.

They should also receive appropriate training to enable them to set up small workshops for making tech- nical aids to serve other disabled people.

The role of organizations for the disabled will include forming pres- sure groups to work on governments so that they adopt national policies and legislation favourable to the development of CBR. The disabled, their families and the community need to be made aware of the advan- tages of joining and taking part in

rehabilitation and social integration.

The needs of different categories of disabled people must be examined and identified, and the organizations will have to find and recruit volun- tary helpers, at the same time look- ing both at home and abroad for financial support and innovatory techniques. •

Mr Tamba Camara is General Consultant of the Pan African Confederation of Handicapped People and Deputy Vice- President of Rehabilitation International for Africa His address is Post Office Box 1754

Nouokchott, Mauritania. '

When they ioin forces, persons with disabilities can considerably improve their living conditions.

8 World Health • 48th Year, No. 5, September-october 1995

Safeguards that prevent disabilities

Pierre Maurice

5

^{ome of} the disabilities from which large numbers of people suffer, often for a lifetime, are the result of injuries, whether inten- tional-that is, resulting from acts of violence- or unintentional, like those caused by road accidents.

Preventing such disabilities, to a large degree, involves preventing injuries, and this is the approach that has been employed since the 1980s by the public health sector of Quebec Province in Canada.

Injuries cannot simply be dis- missed as "accidents", that is to say fortuitous and unforeseeable events that are beyond our control. Rather they reflect a break in the dynamic balance that ought to exist in every community between the individual, the environment and all the different vectors capable of transmitting energy. Maintaining that balance should allow us to reduce to a mini- mum the number and the severity of injuries.

In order to do this, we need first of all to fully recognize the problems, their causes and the possible counter- measures. Databanks have been developed or created in Quebec which will enable us to detect key events that may give warning of potential dangers ahead.

In turn, countermeasures are devised that will help us to reduce the probability of events occurring which may lead to injury, to limit any damage incurred when in spite of all precautions such events occur, and finally to minimize the consequences of such damage. As in other fields, the most effective interventions are not necessarily those that are aimed directly at the most obvious cause.

For instance, even though injuries are

Promoting rood safety in Kuwait.

"Security is a prerequisite for maintaining and improving the health and well-being of the population. lt is the state or situation of being

safeguarded from hazards of a material or moral kind, thus giving rise to a public

perception of being protected from danger. "

very often a direct result of human behaviour, we tend to put greater emphasis on measures that do not call for a change in that behaviour, preferring rather to change the environment or make technological improvements, which usually prove to be more effective, more universal,

more impartial and longer lasting.

Only then do we get to work on changing behaviour as a means of reinforcing the impact of the priority measures that have been taken.

Most of the effective solutions require skills that lie outside the range of the health system. So it is essential for the health system to be integrated within a multisectoral network, where it can play the role of informant, serve as a link between different organisms which usually tend to ignore each other's existence, and steer the priority measures towards the goals of health and security. Raising awareness in favour of such security measures entails appealing to different decision-making levels -local, national, regional-all of which can be induced to contribute to a synergetic effect through defining common objectives.

Health promotion

WHO has defined health promotion as the process of enabling people to increase control over, and to improve their health. The public health network of Quebec adheres strictly to this definition and also to the different strategies enshrined in the Ottawa Charter for Health

Promotion, adopted by 35 countries in 1986, name) y, to promote personal initiatives that favour health, to encourage mutual aid, to create healthy environments, to encourage community participation by the public, to reorient health services towards prevention and to promote public policies that favour health.

Actions aimed at reducing in- juries need to be inserted within this

World Health • 48th Yeor, No. 5, September-October 1995

A peaceful social climate contributes greatly to achieving a high level of security.

general framework of intervention, an essential part of our activities being the promotion of security with the goal of improving the state of health of the general population.

Security was defined as follows by the Quebec Public Health Centre in August 1994 during a workshop of the Security in Everyday Living team.

"Security is a prerequisite for maintaining and improving the health and well-being of the popula-

tion. It is the state or situation of

being safeguarded from hazards of a material or moral kind, thus giving rise to a public perception of being protected from danger.

"The attainment of an optimal level of security for an individual or a community presupposes the pres-

ence of four conditions, and of a guarantee that everything possible has been done to bring about or to maintain those conditions:

• the satisfaction of primary needs;

• a peaceful social climate;

• control of biological, physical or chemical hazards;

• respect for and protection of the physical and moral integrity of every individual.

'These conditions can be guaranteed by taking action:

- on the environment (physical, social, technological, political, economic, organizational and so forth); and

- on human behaviour."

Ethics and health

9

This definition goes well beyond the mere prevention of unintentional or deliberate injuries such as has been practised hitherto in Quebec.

Certainly it calls for the intervention of other people than those who are normally involved in this field. A large number of psychosocial prob- lems are directly linked to the issues of security (violence, abuse, negli- gence, poverty and so on). The task of promoting secure environments has therefore to be shared by the public health sector and a great many other partners.

All these considerations only represent a start, a basis from which all the measures aimed at preventing injuries can be developed in differ- ent ways so as to favour a more positive and all-embracing approach, complying with modern trends of health promotion and closer to the preoccupations of the general populace. Armed with such measures, the challenge for the future will be to define properly the field of expertise of our health insti- tutions, to help our partners to appre- ciate that expertise, and to ensure that we have the necessary control to carry out preventive actions that will be truly effective. •

Or Pierre Maurice is the Coordinator for Security in Everyday Living and Head of the WHO Collaborating Centre on Community Safety Promotion, Ouebec Public Health Centre, 2400 rue d'Estimauville, Beauport, Quebec G 1 E 7G9, Canada.

D

i

sabilities, and issues of health or ill-health in general, increasingly face us with ethical questions about individual choice, health policy and the value systems of the societies we live in. With the range of medical technologies constantly widening, how do we balance individual with social needs? Who should decide, the individual, the family, the doctor, or the State? How do we provi de for prevention or rehabilitation while at the some time ensuring maximum opportunity for full parti cipation in economic and social tde? If the development of technology is inevitabl y driven by market forces, what happens to the principle of equity? If not, what are the other forces involved, and how do we use them? Con the value of a human being's life or health be measured? Should it be?

Per ceptions of health itself vary from cultur e to culture. How do we promote mutual respect and human, social and international sohdarity?

Questions of this kind are arising more and more frequently and u

r

gently, thanks mainly to our many successes in health and economic development, and the ever-growing influence of technology. They arise i n administrati ve settings too, where i ndividual decisions easily disappear in the anonymity of bureaucrati c procedures. To help establish forums and modalities for tackhng these issues, the Director-General of WHO convened an

informal consultation on "

ethics and health at global level" in Geneva from 30 August to 1 September 1995. The participants, from both developing and industrialized countries, came from a variety of professional backgrounds,

i

ncluding medicine, public service, scientific research, university lecturing and local development work.

They joined several WHO staff members for three days of lively discussion, establishing eight major themes to be further explored

during the coming months.

10 World Health • 48th Yem, No. 5, September-October 1995

living with disability

Volker Krause

The writer, who has impairments of a// limbs, describes how a person with the same impairment may encounter handicap in one country but be independent, mobile, self-sufficient,

integrated and free in another.

B

ecause of a congenital skeletal impairment of my limbs, I wear two lower leg prostheses and am limited in my handling abilities. Over the years I have been able to compensate for my upper limb impairments by using my elbows and occasionally my mouth.

My level of functional mobility depends on the use of lower leg prostheses. However, the level of handicap encountered depends on the society in which one lives. The International Classification of Impairments, Disabilities and Handicaps (ICIDH) (see box on page 4) devised its codes as a tool for measuring the effectiveness of policies for people with disabilities;

but they also serve to assess cross- national differences.

Up to the age of 21 I lived in Germany. I left that country six years ago for the United States.

Handicaps of several kinds were an everyday experience in Germany, and only after my arrival in the USA did those handicaps largely disap- pear. Ramps, elevators, accessible public transport and adapted public facilities are mostly absent in Germany but fairly widespread in the United States where, further-

more, I was not barred from taking

driving lessons and driving a car. I still remember my driving instructor in Mississippi saying, "Show me

In spite of having two artificial legs, Vofker Krause was encouraged to drive in the USA

that you can do it." I had never previously been allowed the chance of showing that I could do it.

Experts in my native country, who did not have any disabilities, declared that I could only drive a car that was specifically equipped for my needs. Their ruling that special equipment would have to be in- stalled at a cost of US$18-20 000 put an end to my hopes of acquiring a driving licence there. In fact their report itself cost more than all the driving lessons I subsequently took in the United States. For almost six years now, I have been driving a regular car with automatic transmis- sion but no extra equipment. The rush-hour traffic in Chicago, Detroit and Washington D.C. has given me no problems.

A matter of legislation

These experiences suggest that eliminating handicaps in the areas of jobs, social integration and economic self-sufficiency is largely a matter of disability legislation, political culture and social attitudes towards people with difficulties.

These vary widely from country to country. In the USA, fundamental

pieces of legislation such as the Americans with Disabilities Act (ADA) provide disabled people with legal recourse against discrimina- tion, while public attitudes tend to emphasize accessibility and integra- tion rather than segregation and confinement in isolated rehabilita- tion centres.

In most countries there is no legislation equivalent to the ADA, and indeed some institutions may even side with those who discrimi- nate against people with disabilities.

In 1993, in the north German town of Flensburg, for example, a court supported the claim of a vacationing couple that their holiday had been spoilt by the presence of disabled people in their hotel. The political culture tends to emphasize segrega- tion rather than encouraging inde- pendence and integration into society.

My experience shows that a person with an impairment may encounter handicap in one country but may be helped to be mobile and self-sufficient in another. •

Mr Volker Krause is o doctoral candidate in political science. His address is Department of Political Science, University of Michigan, 560 I Haven Hall, Ann Arbor, M/ 48 I 09-

1045, USA

World Health • 48th Year, No. 5, September-October 1995 ¹¹

What are the Abilympics?

Harry S. Y. Fang

T

he 4th International Abilympics, held this

September in Perth, Australia, brought people from more than 80 countries together for a week of contests of occupational skills, living and leisure skills, and artistic performances. At the same time, a conference addressed issues of employment, equity and empower- ment, legislation and policy, recreation and leisure.

The 1st International Abilympics - a showcase of the remark-

able talents of people usual- ly described as disabled- was organized in Japan in 1981 during the United Nations International Year of Disabled Persons. The objective was to demon- strate that people with dis- abilities are talented in many different work skills and should be offered equal opportunities in the voca- tional area. So much enthu- siasm was created in Japan that the 2nd Abilympics (in Colombia, 1985) and the 3rd Abilympics (in Hong Kong,

1991) both saw increased participation and a greater number of work areas con- tested.

The fourth in a series of contests of occupational skills, living and leisure skills and artistic performances demonstrates that people with disabilities are talented in many different fields.

partiCipation. The emphasis is on cooperation, friendship and inter- dependence.

By contrast with the well-known Paralympics- the international sports competition for people with disability, the Abilympics offer opportunities for more people to explore their own potential and resources in diverse and productive areas. The competitive aspects provide motivation and reward. It is not only the "strongest and quickest"

who can take part but those with and without disabilities, of all ages and backgrounds, independent of movement abilities.

Whether held at district, city, national or international level, the Abilympics festival pro- vides opportunities for people to learn the fun and value of cooperation and mutual respect. There are obvious advantages

The Hong Kong event attracted almost 2000 par- ticipants, both disabled and able-bodied. In addition to 30 "occupational skills"

contests, including typing, woodwork, computer pro-

Painting orchids. This young girl has developed the potential offered by her feet to compensate for having no arms.

in holding these competi- tions in combination with conferences on rehabilita- tion. Many people who would not normally attend such meetings enjoy the chance to share experi- ences and exchange ideas, while also demonstrating their skills and reminding more seasoned confer- ence-goers of the enor- mous resource that people with disability represent.

In the long term, the aim gramming, accounting,

drafting and engineering drawing, Hong Kong extended the original concept by creating categories of Leisure and Living Skills and Performing Arts.

The Leisure and Living Skills category is about pursuing quality in life. It challenges participants to exercise their imagination and ere-

ativity in events such as cookery, kite design and flying, flower arranging, and waste recycling. The Performing Arts section appeals to music, dance and drama enthusiasts.

In these contests, participants com- pete in teams composed of people with and without disability, high- lighting the ideal of equality through

of the International Abilympics is a better working and playing society for all. •

Professor Harry S Y. Fang is Director of the WHO Collaborating Centre for Rehabilitation, Hong Kong Society for Rehabilitation, and President of the 4th Hong Kong Abilympics Organizing Committee. His address is 7 Sha Wan Drive, Pokfulam, Hong Kong.

12

Morocco's

friendly

• •

assoc1at1on

Nejla Essaafi

In the words of Morocco 5 association for the disabled, I'Amicale marocaine des Handicapes:

"The only handicapped people are those who

have lost heart!"

World Health • 48th Year, No. 5, September-october 1995

'

he association that looks after disabled people in Morocco is called "the Friends of the Handicapped" - 1' Amicale maro- caine des Handicapes (AMH) - and its inspiring approaches and activi- ties ensure that it lives up to the name. It was in fact set up on the initiative of disabled people and their friends - people who have seen for themselves the suffering and unceas- ing struggle of victims of an accident or of a congenital condition. And these "friends" have together built up a very dynamic association in which everybody works on a strictly unpaid basis.

This young polio victim, able to go to school on his own, symbolizes the hope of full integration aimed at by the Amicale marocaine des Handicapes.

Indeed, by contrast with the rather gloomy talk that you occasion- ally hear in some such institutions, what immediately strikes you is the mature and positive attitude. The association's objective is integration of disabled people, not only in the heart of the community but equally in professional life. Although AMH is only three years old, it has set in train programmes of help and sup- port to the disabled through the grant of study scholarships or by helping to set up cooperatives, thus encouraging a wide range of professions and trades. Among those who have benefited from this substantial aid are an electronic engineer, two com- puter software experts, two doctors, a chartered accountant, a hairdresser, a

beautician, a secretary and a graduate in economic sciences (who also captains AMH's wheelchair basket- ball team-for we are a sporting association too).

A positive image

The association's President as well as the two Vice-Presidents are them- selves in wheelchairs, and all three are active in the professional field and perfectly integrated in society.

The image that they convey all round the country is an absolutely positive one, to the point where young dis- abled people try to identify with them. Furthermore, being integrated both socially and professionally means that they are themselves entirely aware of the realities around them, can raise the alarm when necessary and can propose concrete solutions. It is precisely thanks to their unceasing activities in creating public awareness about the AMH that the Moroccan government felt morally obliged to launch a new

institution, the High Commission for the Handicapped, whose duty it will be to coordinate action on a national scale in this field.

The association already has several major events to its credit:

two international symposiums on what it is like to be disabled, a solidarity parade which toured 15 towns, a mobile unit providing prostheses which visited 19 towns, a concert by singer Carlos Santana, and two phone-ins aimed at raising funds to build Morocco's first Centre for Functional Rehabilitation, which is a vital step if disabled people are to be fully integrated in society. We have every confidence that the

"friends" of the AMH will succeed in channelling all their energies into making the centre a reality. As the slogan of the AMH puts it: "The only handicapped people are those who have lost heart!" •

Mrs Nejla Essaafi is Programme Director of Handicap International, Amicale marocaine des Handicapes, I 0 rue Velasquez et boule- vard Abdelmoumen, B.P.5369, Casablanca, Morocco.

World Health • 48th Year, No. 5, September-October 1995 13

Prostheses and orthoses in developing countries

Anders Eklund

There is a pressing need for better manufacturing and supply systems to provide artificial limbs and support devices in developing countries.

S

ervices to provide artificial limbs (prostheses) and appli- ances to support or correct a deformed limb (orthoses) play an important role in the rehabilitation of people with physical disabilities.

The provision of prostheses for amputees, calipers for people with paralysed limbs, and orthopaedic sandals for leprosy patients -to mention a few examples - can make a dramatic change in the life situation of the disabled person. Instead of being dependent on charity, or even isolated from society, the person may be able to work and lead a normal, independent life.

However, just as in the case of rehabilitation services in general, prosthetic and orthotic services are rarely given the priority they deserve.

Though general awareness about disabled people has increased in developing countries during recent years, the financial resources for this sector are still very limited and the reality today is that only a small percentage of people with disabilities get assistance. Those resources are unlikely to increase much in the fore- seeable future, but it is still possible to improve the situation for people with physical disabilities. A new way of thinking is necessary, and an approach that is adapted to the local conditions of the developing country

rather than to working methods in the industrialized world.

Imported components

In developing countries, prosthetic and orthotic production is often based on imported components (such as ready-made feet and knee joints for prostheses). These are used in high-quality orthopaedic appliances but, because of the high costs, only a limited number of people will bene- fit. If a less sophisticated technology

is used, many more patients can be

fitted with appliances. Such tech- nologies, which still provide comfort for the patient and look good, are all based on local production of the components. Even though some raw materials have to be imported the appliances will cost considerably less than those made with imported components. Moreover, most of the money which would otherwise have favoured foreign suppliers will

remain in the country and benefit the national economy.

In some countries, prosthetic and orthotic services have been linked to community-based rehabilitation programmes. This makes it possible to identify people with physical disabilities in remote areas and to refer them to orthopaedic work- shops. Since the workshops must not be located too far from the vil- lage, there is a need for small, decen- tralized satellite workshops, not permanently staffed but visited regularly by technicians from the main workshops. Provided appro- priate technology is used, the run- ning costs will be reasonable and the distribution of services to those who need them will be ensured. •

Mr Anders Eklund is Proiect Manager of the WHO Collaborating Centre for Orthopaedic Technology, Department of Biomechanics and Orthopaedic Technology, University College of Health Sciences, Box I 038, S-551 I 1- )0nkoping, Sweden.

Locally made prostheses and appliances ore reasonable in price, enabling more disabled people to lead normal, independent lives.

14 World Health • 48th Year, No. 5, September-october 1995

Landmines: dragon's teeth

Alessandro Loretti

Sown like so many dragon 5

teeth, landmines kill and maim an average of 150 human beings every week.

They perpetuate a climate of fear even after a ceasefire and prevent a return to norma/life.

A

bout 110 million landmines have been sown in at least 65 countries worldwide. Afghan- istan, Angola, Cambodia and Iraq are at the top of the list for the sad title of most severely landmine-infested countries. No region is spared:

landmines have been laid in parts of South America and in the Pacific, in northern Europe and in the southern Atlantic.

The most heavily mined continent is Africa, where estimates speak of at least 40 million landmines. After Angola, the most severely infested countries are Mozambique and Somalia. Several countries north of the Sahara also have minefields, left behind by the Second World War; in May 1990, four professional de- miners were killed by mines laid in 1942 during the battle of El-Alamein.

Landmines are an aggressive and long-lasting pollutant; they cannot be

"stopped" by a peace agreement, and nobody knows for how long they can stay active.

The General Assembly of the United Nations has called for a global ban on the trade of landmines, and for a revision of the 1980 UN Convention on Inhumane Weapons. The governments of the major manu- facturing countries have agreed on setting moratoria on the exports of these devices. But new landmines continue to be manufactured, traded and laid on top of those already in the ground. They are increasingly used in "low-intensity" conflicts in the world's poorest countries. In this context, the hazard of landmines becomes deeply entangled with considerations of humanitarian action, environment, development, international economy and solidarity, and the issue reveals facets that are as paradoxical as they are tragic.

11

Cost-effective"

There is no "big money" in land- mines, which cost about US$ 5 each.

The financial interest of their trade is relatively small, but their grim

"cost-effectiveness" in military terms seems to keep alive manufacturing and trade. Such defence considera-

Victims of landmines: their numbers are unfortunately on the increase throughout the world.

tions should be put in the proper perspective of the cost of mine- clearance: once laid in the ground, each mine costs about US$ 1000 to retrieve and inactivate. The UN experience in Afghanistan is that de- mining one square kilometre of land, irrespective of the number of mines that may be present, costs about one million dollars.

In terms of individual and collec- tive suffering, the cost of landmines is much greater. Besides killing and disabling people (worldwide, 150 every week according to recent estimates), landmines preclude access to farming land, water and firewood, markets and services:

they have a dramatic impact on the environment, the life of the commu- nities and the economy of a country.

In low-intensity conflicts, land- mines are laid in fields, villages and towns, around shops and health units, even inside individual homes.

Under these circumstances, as many as 90% of victims are civilians, mainly women and children. This adds to the tragedy: one woman killed or mutilated means greater risk of illness and malnutrition for her entire family; one disabled child represents a long-term burden on his or her family, the health services and society at large.

Landmines can be an insurmoun- table obstacle to the delivery of humanitarian assistance in times of conflict, and to the building of peace. Even after a ceasefire, land- mines hinder the demobilization of soldiers, the resettlement of refu- gees, farming, the free circulation of people and goods, and communi- cations. They perpetuate a climate of fear, and affect the normalization of life and reconstruction. Areas known, or feared, to be mined can remain lost to human settlement and economic development, for ever, as "effectively" as if contaminated by a nuclear explosion.

World Health • 48th Year, No. 5, September-October 1995

The delicate ;ob of defusing mines.

Public health and medical aspects

The explosion of a blast mine de- stroys the foot of the victim and part of one, or both, legs. Fragmentation mines can kill or mutilate over a radius of 40 metres. Angola already counts 70 000 or more amputees, Somalia 15 000, and Mozambique 1 0 000. Besides the workload repre- sented by wounded and disabled, and the wide-ranging socioeconomic damage mentioned above, landmines directly affect the health sector's general performance. They preclude access to dispensaries and hospitals;

they jeopardize mobile vaccination teams, the delivery of drugs and so forth. Financial and human

resources must be diverted to special care and long-term hospitalization, hindering all primary health care activities.

In human and medical terms, each landmine accident poses daunt- ing challenges. For medical care to be effective, it must be given within the first six hours but, on average, victims take between six and 36 hours to reach a health unit. Most accidents occur in remote areas; and since landmines are seldom laid in isolation, rescuing a victim from a

minefield is difficult and dangerous.

In fact, it appears that as many as

55% of victims die before receiving

any assistance. For those who reach a dispensary or a hospital on time, only the proper management of shock, injuries and infections can ensure their survival. All this re- quires technical capacities and re- sources that are hard to come by in rural health services. For instance, each victim needs a blood transfu- sion; but "safe" blood is a scarce commodity, and contaminated trans- fusions can transmit HIV, malaria, hepatitis B, and so on.

Each casualty will remain in the hospital for one to two months, and will undergo three subsequent opera- tions. Healing takes about six months, at which point the victim needs a prosthesis. One artificial leg costs between US$ 12 and $120 while learning to use it takes about six weeks; an appliance can last three to five years but it needs mainten- ance; growing children need a new one every six months, and prosthetic workshops can be rare. Under- standably, most patients suffer from depression. Farming or finding employment, maintaining or building a "normal" family-everything is difficult for them.

All this points to a vast range of needs: from community awareness to means for physical, psychological and social rehabilitation, by way of education for first aid, access to health services and resources for

Is the warning sufficient protection2

IS

adequate treatment. All this goes well beyond the cuJTent reality of communities and services in most poor countries, especially in times of conflict or post-conflict. Of course,

"prevention is better than cure". Landmines are causes of death and disability; primary prevention against their effects can only be ensured by a complete ban on their manufacture, trade and use, greater awareness of the affected communi- ties, and de-mining of infested areas.

Given the above figures, effec- tive solutions at country and global levels can only come from inter- national solidarity, political as well as financial. The UN Department of Humanitarian Affairs is already active in this direction through a special trust fund for mine- clearance. As far as the health sector and WHO are concerned, all plans for mine-infested countries should specifically address the needs in terms of surgical, medical and nursing capacities, blood- banks, long-term hospitalization, rehabilitation, employment policies and specific provisions for the disabled. •

Or Alessandro Loreffi is Senior Technical Adviser for Africa, WHO Pan-African Emergency Training Centre, P 0 Box 3050, UN ECA Building, Addis Ababa, Ethiopia.

16 World Health • 48th Year, No. 5, September-october 1995

Mental health: cl

Judi Chc

Among people who use or have used mental health services, a strong leadership is developing which promotes positive values of individual dignity and the need to respect peoples own choices.

P

eople who use mental health services have, historically, been unable to control their own categorization or treatment, which have been designed by mental health professionals and which have frequently been considered by recipients as intrusive and unhelpful.

In the past 20 years, this situation has begun to change, as users of these services in many parts of the world have begun to define for them- selves their own needs, problems, and solutions. User-controlled organ- izations are seeking to influence the

manner in which mental health services are delivered, as well as to challenge the devalued role which those who are defined as "mentally ill" have in society. These user groups (sometimes referred to as

"survivor groups") are usually

locally based (although increasingly networked together nationally and internationally), and place primary value on self-determination, choice and the attainment of basic legal rights.

At the same time, the world of mental health treatment has been changing, with a gradual reduction in the length of stay in institutions and the development of various methods of community care and treatment. But unless these changes include involving service users in their design and implementation,

"community care" has often in practice meant the transfer of old, institution-based ways of thinking to new locales, with the same hier- archies preserved that leave service users, once again, in powerless and controlled positions.

Respect for human dignity

"Rehabilitation", as one of the more recent developments in mental health care, has the potential to be either one more method of profes- sional definition and domination or, alternatively, to become a joint enterprise in which professionals and users combine to transform the social roles of service recipients. If the latter approach is to prevail, it is essential that user groups be brought into the process of designing, imple- menting and evaluating programmes and services to ensure that they permit users to enter the worlds of work and community living in ways that respect individual choice and human dignity. Without such an approach, which necessarily involves recognizing the ways in which power and powerlessness have historically shaped mental health service delivery, rehabilitation can only become just one more thing which is done to people without their meaningful consent or participation.

User groups now exist in many countries of the developed and

it ^is essential that ^users of mental health services ore involved in the ^process of designing and implementing the services they need.

developing world.

Independently of similar groups in other places, their analyses of traditional psychiatry are remarkably similar, stressing the in- adequacy of a "medical model" of individual defects to explain their disadvantaged role in society. When these groups develop communi- cations with other, more established groups, they find powerful confmnation of the truth of their in- sights, which are derived from personal experience and seem to transcend differences in culture, language, and political and social organization.

World Health • 48th Year, No. 5, September--{)ctober 1995

IOICe • and dign ity

mberlin

Networks like the European Network of Users and Ex-Users in Mental Health (Amsterdam, Netherlands) and the World Federation of Psychiatric Users (Auckland, New Zealand) help newer groups to feel confidence in their ability to accurately perceive their position in society and the value of their proposals for change.

It is therefore essential for re- habilitation professionals who truly believe in the ability of their clients to enter or re-enter society in valued roles to ensure that rehabilitation services themselves place service users in such roles. Only by consult- ing in meaningful ways with the people who use their services can rehabilitation hope to become a truly different form of mental health service.

User groups continue to develop their own programmes for assisting their members to leave the role of

"mental patient" behind and to become contributing members of society. Their programmes of politi- cal and social change, while not (usually) cast in the language of rehabilitation, are truly rehabilitative in nature. Nurtured within

groups in which everyone has shared the experience of being discredited and devalued because of a diagnosis, a strong leader- ship is developing which promotes positive values of individual dignity and the need to respect people's own choices. Further, individuals within user groups are given opportuni- ties (often for the first time) to exercise choice, work with others and develop skills.

practical knowledge of recovery and empowerment, are essential job requirements. Such people serve as valuable role models, encouraging other users to see the untapped potential within themselves. In addition to developing job opportu- nities within user-run programmes, users are increasingly entering the mental health workforce in new roles in which their psychiatric experience is valued.

A new concept needed

"Rehabilitation" itself is a term that strikes many user activists as ques- tionable. What is it that users need to be rehabilitated from? To many, it is the concept of "mental illness"

and the practices that flow from it that are in need of rehabilitation, since an individual defect model, particularly one based on biochemi- cal or genetic factors, does not seem to take into account the potentials for growth and development that are so clearly demonstrated within user groups. Professionals who want to

Many user groups have created new work opportu- nities for their members in which experience as a

psychiatric patient, and Job opportunities contribute to revealing untapped potential.

17

assist service recipients to realize their potential and to transform their lives need to pay close attention to the developing theories and practices within the user movement, and to examine the ways in which their own practice needs to be transformed.

By entering into a true partner- ship, in which users and providers can respect their differing forms of expertise and thereby learn from one another, the concept of rehabilitation can become an instrument for gen- uine transformation. If, on the other hand, rehabilitation is to remain a strictly professional field in which old ways of thinking prevail, it will become just one more element of mental health care from which users will develop ways of extricating themselves. •

Msjudi Chamber/in is Pra;ect Director at the Center for Psychiatric Rehabilitation, Boston University, 930 Commonwealth Avenue, Boston, MA02215, USA

18 World Health • 48th Year, No. 5, September-October 1995

Intellectual disability

Peter Mittler

The needs of people with intellectual disabilities have often been overlooked in programmes designed to reach disabled people in general. They themselves are calling for their needs to be met.

T

he term intellectual disability is increasingly accepted as appro- priate by the main international professional and scientific associa- tions. Mental retardation is still the official terminology of WHO, as well as of the United States; other countries use terms such as mental handicap, learning disability, intel- lectual impairment. Mental defi- ciency or mental subnormality are no longer in use and language which appears to encourage stereotypes and generalizations is discouraged, such as references to the "retarded".

According to the American Association on Mental Retardation (AAMR), "Mental retardation refers to substantial deficits in cer- tain aspects of personal competence.

It is manifested as significantly sub- average abilities in cognitive func- tioning, accompanied by deficits in adaptive skills". For an individual to be regarded as having an intel- lectual disability, both cognitive functions and ability to function in society must be impaired; neither is sufficient on its own. The AAMR definition also emphasizes the nature and intensity of the supports that an individual may need to function in society. In other words, the current approach to mental health is not limited to identifying deficits in the individual; it underlines the impor-

ment and the support that is needed to do so.

People with a mild intellectual disability may be accepted in schools and in the local community, though the threshold of acceptance will vary with social and economic circumstances and also with local attitudes. Most people with more significant degrees of intellectual disability will require support from their families and from social service

·agencies.

It is estimated that one in ten of all disabled people has a significant intellectual disability-over 50 million in the world at the present time or up to l% of the population.

Mild forms will affect up to 3%. By 2025, three-quarters of them will live in developing countries, mainly as a result of much more rapid popu- lation growth and also because many children who would previously have died at an early age are now surviv- ing and needing services.

Stimulating learning and development

The families of infants identified at an early age as having an intellectual disability will need practical advice and personal support in stimulating

the learning and development of their children. Home-visiting schemes have been used in many developing countries. The essence of this approach is that the parent and a home visitor jointly assess the developmental level of the child and on that basis plan a programme of teaching which the parent carries out at home.

Inclusive education involves schooling for all children and ensur-

Ideally, people with an intellec- tual disability:

• have the same basic rights, needs and responsibilities as all other citizens to be fully included in society and social institutions;

• can contribute to and enrich society;

• can learn, provided they are properly taught and are given time to do so;

• will be supported by persons and services within the commu- nity;

• should be able to make their own choices and decisions;

• should be able to live with their families or in the commu- nity with appropriate support, and should not be segregated or placed in institutional settings.

tance of interaction with the environ- Plans can be developed to enable teaching to be carried out at home.