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Sectoral Session A-3 Monday, September 5 14:00 - 15:30

INDEPENDENT LIVING: THE TOTAL CONCEPT

Chairperson: Ms. Judith Heumann Co-Director, World institute on Disability (U.S.A.)
Co-chairperson: Prof. Takehiro Sadato College of Social Welfare, University of Osaka Prefecture (Japan)

INDEPENDENT LIVING

THE TOTAL CONCEPT MODELS IN VARIOUS COUNTRIES

KALLE KONKKOLA
National Council on Disability, Helsinki, FinlandI


NTRODUCTION

As a background for this paper I present the following diagram, which describes the discussion. I have picked from different sources goals, definitions and descriptions which are ostensibly unrelated but which in fact create an interesting combination.


WHO

WPA

SUBJECT/OBJECT
ment prevention patient
disability rehabilitation client
handicap equalization of
opportunities
citizen

The first column represents a medical approach, the second a social one and the third is political. According to my own evaluation we are moving from the first towards the second but the third is still remote even if some of us can see it as a possibility.

MOVEMENT

The IL or independent living movement was born in different parts of the world simultaneously at the beginning of seventies. It has a different appearance in different countries. Very close to the IL movement is the disabled people rights movement; in fact they are one and the same movement in Finland. In Finland we have been speaking about a new movement for the disabled people. This because in fact we have returned to the origins of disability activities. At one point the old movement became bureaucratic to the extent that it was in fact a part of administration.
There is an interesting article about this in the Disability Studies Quarterly. The providing of services by a the movement brings with it the danger of stagnation.
The basis of the disabled people's movement has been action based on the situation of people themselves. This is a necessary, but not a sufficient condition. The actions should have two objectives:

  1. To make the world better for disabled persons
  2. To strengthen disabled people for the realisation of the first objective.

The only real means we have to this end are people themselves. Mutual education and growing together.
In people's movement it is necessary and in fact vital that people speak for themselves. Disabled people should be the decision-makers of the movement as well as the executors of those decisions. Activity based on personal experience is possible only for a person which has the necessary experiences. Among the self-criticism which has been expressed within the movement is the fact that there has been insufficient participation by the deaf and the mentally handicapped.
To change the world it is ultimately necessary to advance communication between disabled people and the public at large. people should be ready to confront other people with an open mind and from the basis of equality. In open communication it is important to know how to receive. For this reason it is important for disabled people to build a solid foundation in their communication with each other. Self-respect and self-confidence are necessary to keep the world around us from making us adapt. This is the basis for peer counseling.
Changing the world is a continuing and strenuous project, for which reason it is important that disabled people have a refuge where they can meet and discuss their experiences. For this reason joint activities are important. It also provides an opportunity for developing models for action and making new plans.

III. objectives.

The objectives of the IL movement can be summarized as follows: Provide disabled people with their basic needs, under their own conditions! These basic needs include getting by with day-to-day tasks, a barrier-free living environment, accessible vehicles, transportation services, income, work, and personal assistants. people must have personal control over these services. The objective is totally independent living. I would like to reassure those who think that this is unrealistic by underlining that both independence and freedom always imply responsibility.
Bearing responsibility is not simple. It is not instinctive; it must be learned. It cannot be learned by theory, it comes through experience. Taking responsibility for one's own life is the subject of various courses within the IL movement. In these courses the participants compare experiences which helps them confront situations better. You can't practice your life, you have to live to get practice."
At this point I won't go into further detail about what kind of a world I am working for. If the notion of the ideal world for people is unclear to someone, it is better that he or she contact the representatives of his or her local movement.

IV. Methods

IL also means solving everyday problems of life without having to live in an institution. In this, the ends and the means converge. The basic idea is to create a service system to guarantee the opportunity to live independently in one's own home in such a way that services are under the control of person involved.
The system of personal assistants is the best manifestation of this method. In Finland we have defined the system as follows:

A personal assistant is a person which person employs, with public financial support, to assist him or her in day-to-day activities to enable person to reside and live outside an institution without burdening his or her relatives and friends excessively.

person is, therefore, the boss: the employer of his or her assistant. The assistant helps person live a normal life. The assistant does not live life on behalf of person, nor does the assistant determine it. The assistant merely performs the tasks which person is unable to do because of the disability.
person has to take on the responsibilities of an employer. This means that a certain amount of paperwork and mathematical skills are necessary. What is more difficult is the psychological side of being the boss. person must guide the assistant in his or her work, and take care of the employee. A disabled person who mistreats an assistant may end up without help. But if the working relationship becomes a good one, it becomes possible for person to participate in the community in a new way, or in a way which is normal for most people, but new for many disabled people.

Finland

In Finland the personal assistant system has been in use on a trial basis for about 8 years. With the adoption in 1988 of the new law on services based on disability, the system has become normalised. In a way, this new law is revolutionary in that it declared that disabled people in fact have a right to certain basic services. These include housing, transportation, interpreter, and home remodelling services. The law will come into full effect at the beginning of 1992. According to the law, municipalities in Finland must provide sufficient residential services by 1992 to allow them to live in their own homes. The personal assistant system is one way to arrange these services.
The law will therefore change the life of severely disabled people to a great degree. At the same time society as a whole will become better for all of us.
The Finnish IL movement has prepared itself for this change. We have established various support systems and training. We have held successful one-week courses, our so-call Boss Courses. As another alternative, we have developed evening courses, which are more suitable for larger urban areas. In connection with these courses we have produced a Personal Assistant manual, of which the first two parts have already been printed. The first part contains the main principles of personal assistant system as well as practical tips on how to find a good personal assistant, what to do when problems arise, etc. The second part describes Finnish employment legislation and taxation. The third part will be ready next year and will be a guide for and their assistants on housekeeping.
Exchanging experiences and raising self-esteem is the most important goal of our education activities.

OTHER MODELS

During this congress we will learn about the IL programmes of various other countries, so I will not go into them. The main differences revolve around which part of society is responsible for financing. In the Finnish model the municipalities pay for the expenses with state support. In nearly all countries the system is a trial system.
Another important difference involves on arranging the system. In the Finnish model the municipality bears the main responsibility, while our organisation arranges some support services and does some lobbying. In many other countries much of the activities are the responsibility of people's organisations. Thus, the Center for Independent Living (CIL) can contain many different kinds of services, from employment agency work to transport services and wheelchair maintenance.
In Finland we have deliberately tried to avoid providing material services because we have seen identification with the bureaucracy as a great danger. We have had bitter experiences of this in Finland, with organisations which provide services trying to hold up progress. We feel that support and pressure are our natural duties. Under other conditions a different approach might be appropriate.
At the same time it is necessary to consider how to look at the detailed planning of services. themselves are often sidestepped in this process even though the solutions to many small, but important questions would require their cooperation. A bureaucrat who opposes progress can sabotage even the most progressive of laws.
The solution to this problem is twofold. First, disabled persons with both experience and training are needed for the planning of services. Second, it is necessary to develop consumer and planning methods. Municipal officials are noticing increasingly more and more frequently that it pays to cooperate with people when planning a Personal Assistant system. We have had particularly good experiences about this in Helsinki.
It is, of course possible, if the IL Movement has sufficient capacity, to develop such good plans that the officials will adopt them right away. In Finland we have published as I said earlier manual along these lines which many municipalities have already bought. Once established, it is difficult to initiate reforms in a defective system.
In Europe, the Danish city of Aarhus can be termed a forerunner. The Finnish system is to a large extent modelled on it. According to the Aarhus model person is entitled to sufficient help and make his or her own arrangements at the municipality's expense. The programme has been so successful that disabled people from other parts of Denmark have moved to Aarhus. For the city, the programme has had a positive effect on the employment situation.
One of the most important questions is whether or not enough financial support is given for the employment of a sufficient number of assistants. In certain countries there are plans to adopt the Personal Assistant system in principle, but to save money by keeping the payments so small that do not get enough help. This idea appeals to neo-conservatives in particular.

OBSERVATIONS

The system of personal assistants, and the IL idea in general is still just beginning. Various experiments and models still require improvements. An inclusive and a sufficient system does not yet exist anywhere. Not even Finland is a paradise yet, even though we have efficient instruments. Therefore, we need a strong movement to put pressure on the decision-makers. This movement should also increase its international activities to enable us to give mutual support and to learn from one another.
At the same time we must develop the substance of the services, we must build our own support network. Our goal is clear. To create a world in which people can live independently and on an equal basis with others.


THE INDEPENDENT LIVING MOVEMENT IN THAILAND

J. PONGPAEW
Council of Disabled People of Thailand, Bangkok, Thailand


General Information
For many decades, the disabled people in Thailand have stayed in dark, under the label of the "hopeless an useless people". They are seen as hopeless and useless to themselves, to their parents, and to society. The fate of disabled persons are not met with great interest from the society, the Government or Non-Governmental Organizations. It must be admitted that the important baseline data concerning the number of disabled population in Thailand are lacking and in discussion. At present, the National Statistical Office indicates that there are only one percent of Thai polulation, 53 million with disabilities. According to UNESCO report, an estimated ten percent of Thai population are suffering from various sorts of disability. Nevertheless, the number of disabled individuals might be five million or five hundred thousand, more than half of them are in the working age (15-55 years old).
The situation of Thai disabled is generally as same as in other developing countries. They have shared most common problems such as poverty, illiteracy, economic disadvantage, inadequate distribution of rehabilitation services, the social bias and discrimination. Due to the lack of law and regulation concerning the welfare and rehabilitation for the disabled, most of them have been isolated by the public. Their fundamental human rights have been neglected for example the right to have education and get employment.
In education, the State can not make education accessible to the disabled. There are only three special schools for the blind, eight schools for the deaf, three schools for the mentally retarded and one for the physically disabled. Another eighteen schools are integrated in implementing experimental mainstreaming programmes at primary and secondary levels. Therefore, most of the disabled students have to survive though competition to be admitted by the schools and colleges.
In the field of employment, the disabled in Thailand are faced with difficulties in getting a job. Only limited number of the disabled have such opportunity since there are few vocational training centres in the country and the skills and competency of those who complete the vocational training course in comparison with abled-person in general labour market are yet to be upgraded to be more competitive. Besides, handicapped people are often discriminated against in admission procedures especially by the larger business like banking and services.
In Thailand, there is no enforcement of the Social Insurance Act, therefore, the distressed disabled persons have to rely on the assistance from their family, kinship and friends.

Independent Living Movement in Thailand
In Thai society, there is close relations between the members of the family which comprises of at least three generations: grandparents, parents and children including other relatives. Especially in the rural areas, almost all villagers know each other or are relatives. If there is a disabled person in any family, he or she will be taken care by the family depending on the situation or standard of their lives. If they are poor, he/she will be lack of rehabilitation in medical and education. If he/she comes from the middle class family, his/her opportunity to have rehabilitation is better. But whether he/she will have high or low education, it depends on the family's attitude to education. Thus, the fate of disabled is under control of the family.
With the realizing that Thai disabled people did not have the same rights and opportunities to take part in social activities as other countrymen, a group of some educated blind and some disabled who finished their vocational training courses from the Government and Non-Governmental Vocational Training Centres for the Disabled, had evolved self-help movement for the first time in Thailand in 1963. They helped each other according to their abilities in earning or sharing the daily chores. They had little fund donated by Miss Jenifer Caulfield for medical and educational rehabilitation services. These disabled wanted to live independently and tried to earn their own living. They left their families to live alone or with another disabled.
Hence, later this group was developed to be the Association of the Blind of Thailand in 1967, The Association of the Deaf in Thailand, the Association of the Physically Handicapped of Thailand and the Council of Disabled People of Thailand at last.
The priority goals of "self-help movement" in Thailand are freedom and equalization: freedom for the disabled to conduct their own lives like th non-disabled, and equalization of opportunities in education, vocation and recreation.
It's very proud to say that Thai disabled people are truely self-help and independent who have made a stand all by themselves without any assistance. They Iive independently without any pension or welfare from the State. They get money from their own labour even if sometime they are very underpaid. Although there is no accesibility for wheelchair users along the street in Bangkok, the physically handicapped adapt themselves to the surrounding by adjusting appropriate vehicles to help them go on the street such as tricycles controlled by hand. Certainly they enjoy having freedom to live like the ordinary people: to lead their own lives, to work and to marry. They are successful in the primary goal, however, they fail in the second goal of equalization of opportunities. In education, the number of the special schools is not enough for disabled students. There is only 1% of disabled who can attend schools. The social attitude toward disabled people is another obstacle for them in getting job. The disabled are ignored as useless people and are neglected in public awareness, in available services and in legal protections. By the law everybody must have identification card but there is exemption for Thai disabled. Therefore, they cannot open the account at the banks or sign a contract. An environment that is inaccessible sends a clear message to the disabled that "You don't exist". The equalization of opportunities is impossible as long as the "Law for the Welfare of the Disabled" is not enforced.
The organizations of the disabled which are developed from self-help movement are conspicuous success. The main roles of the organizations are representative of the disabled in asking for and protecting their rights. In addition, th consultative service, job-hunting service, emergency assistance and Thai Sign Language interpreting service are provided to the disabled. These services strengthen the independent living of disabled people in Thailand though they have neither budget nor assistance from the Government an Non-Goernmental organizations. Nowadays, the living situation of most of Thai disabled is under the average living standard because of the poverty, low education, lacking of assistances and facilities in living according to their disabilities. In Thailand, there is no Independent Living Centers or any equivalent organizations as in the developed countries such as Japan, Sweden or U.S.A. We expect that in the near future; this year or next year, the Rehabilitation Law for the Disabled will be enforced and the independent living will be supported and promoted. The public buildings and transportation will be accessible to disabled people.
In conclusion, we can say that the independent living movement in Thailand is unique from others because Thai disabled learned to live independently without any assistance from the community, society or modern technical aids. They leave their families, or institutions motivated by the love of freedom which is in th blood of all Thais. So they do not want to be like vegetables, they do want to live like human. Instead of asking for or demanding the society to help them, Thai disabled learn how to stand by themselves. However, they should deeply appreciate if someone will only give them a hand along the street.


INDEPENDENT LIVING ISSUES IN THE UNITED STATES

MICHAEL WINTER
Center for Independent Living, California, U.S.A.


Fifteen years ago the public train system in the San Francisco Bay Area was inaccessible to disabled people who use wheelchairs because there were no elevators to get up to the loading platform. Berkeley City Hall was also not accessible. Wheelchair ramps were practically unheard of. Very few people had motorized wheelchairs. Even the U.S. Post Office was inaccessible. The situation for disabled people in other parts of the United States was even worse.

The time was right for the birth of the Independent Living Movement. In 1972 a group of ten people started meeting together to ask the question of how disabled people could live and maintain their independence in the community. Eight of the ten were disabled themselves. These founders wanted to create an organization which would provide support services so that disabled people could share and participate in society. The original services that were offered included finding and making housing accessible, attendant referral, peer counseling and advocacy.

This was the beginning of the Independent Living Movement. This was the beginning of self-determination for disabled people. This was the beginning of a time when disabled people could choose how to live their own lives. We began to consider seriously how we could go about emptying the warehouses where disabled people had been institutionalized for years. We began to shake society awake and inform it that the old ways were no longer acceptable to us. We were ready to claim our rights.

The Center for Independent Living in Berkeley became the first organization run by disabled people which offered the kinds of services and advocacy which disabled people needed in order to live independently. The Board of Directors mandated in its by-laws from the beginning that a majority of the members of the board and the majority of the people on the staff of CIL would be disabled. CIL was the first agency of its kind in which people with different types of disabilities worked together. Integral to the way in which CIL works was the concept of peer counseling--disabled people counseling with each other on a peer level. CIL was born with the mission to provide services, but it went further. CIL would become a strong political voice in the community and in the nation. Disabled people would no longer be silent.

Over the years CIL has been able to perform two major functions. First, it works with its consumers toward attaining independent living. Second, it works toward changing society at large so as to remove discrimination and to create opportunity for disabled people. CIL's goal is to integrate disabled people into the community at all levels. The "separate but equal" concept is no longer acceptable.

A philosophy as life-giving as that of the Independent Living Movement cannot be held back. It can do nothing but grow, and that is what has happened in these last fifteen years. Today there is a national voice of independent living centers and people with disabilities generally--the National Council on Independent Living, or NCIL. Founded in 1982 when a group of ILC directors met and discussed national and regional issues, NCIL is the only national membership organization of its kind governed by people with various types of disabilities.

NCIL is made up of independent living centers from around the United States. These centers are community-based (i.e., they are non-residential), not-for-profit corporations which are governed and controlled by people with different kinds of disabilities. Centers provide at least four core services to a cross-disability population: advocacy, information and referral, independent living skills training (ILS) and peer counseling. There are approximately 100 consumer-controlled centers across the United States today.

The National Council on Independent Living was organized to support independent living centers by conducting and coordinating the national advocacy efforts of the Independent Living Movement. NCIL seeks to strengthen independent living centers through the provision of technical assistance, public education and other membership services.

NCIL has produced a record of accomplishments and services over the six years of its existence. It carefully monitors federal legislation, for instance, which affects independent living centers and the civil rights people with disabilities. It is often called upon to provide expert counsel and testimony. NCIL's greatest success to date has included major revisions to Title VII of the Rehabilitation Act. During 1986 and 1987, NCIL was able to secure regulations from both Congress and the U.S. Department of Education (which oversees programs authorized by the Rehabilitation Act) that mandate consumer control over independent living centers. These regulations require that the majority of an independent living center's board of directors be composed of persons with disabilities.

There have been other noteworthy accomplishments. NCIL provided technical assistance to the National Council on the Handicapped for the development and publication of Towards Independence, an important report on federal legislation affecting people with disabilities. NCIL has continued to play a leading role in advocating for the passage of the Civil Rights Restoration Act and related legislation. In March of this year the U.S. Congress overrode President Reagan's veto of that Act. The legislation was passed into law, providing for comprehensive civil rights protection for disabled people. Earlier, NCIL collaborated with other organizations in a successful effort to win passage of the Air Carriers Access Act of 1986, which prohibits discrimination against persons with disabilities. NCIL actively participated in the drafting of the regulations to implement the Act.

During the last year NCIL has participated in several significant activities. In September of 1987 there were demonstrations by disabled people in San Francisco. The accessibility of public transportation was the issue. Over 1,000 people participated in the demonstrations and over 300 were arrested and put in jail.

During March of 1988 Gallaudet University, the only deaf university in the world, hired a person as president who had little knowledge of the deaf community and who could not even use sign language. The student body and faculty earnestly protested this hiring. Because of their willingness and courage to protest, they were successful in bringing about her resignation and in hiring the first deaf president in the 134-year history of the school.

Although much has been accomplished over the last fifteen years, we are still at the beginning. There are thousands of disabled people existing in institutions all over the world. There are thousands of disabled people who are regularly denied basic human rights just because they are disabled.

There is still much work to be done, but we will never turn back. We are engaged in a world-wide struggle while we gain a world-wide identity. We will do whatever is necessary and we will work as long and as hard as possible until every institution that imprisons disabled people like criminals is closed down once and for all. We will not rest until every disabled person in every place knows the exhilaration that comes when the human spirit is liberated. This is our task. This is our time. This is our right.


INDEPENDENT LIVING MOVEMENTS IN JAPAN

KIYOHARU SHIRAISHI
National Council of Independent Living of the Disabled, Japan


1) Historical Events Linked with the Independent Living Movement in Japan.

a) The "Green Grass Association": ("Aoi Siba no Kai") was the first group of physically disabled people concerned with independent-living issues. It was first established 30 years ago by graduates of the Komei School for Physically Disabled Children. All members had cerebral palsy.

b) The Income Maintenance Issue: For over 20 years there have been campaigns seeking official recognition of a government welfare benefit for people disabled from childhood. This was first sought by the Green Grass Association. 1980 saw the highlight of this campaign. In this year, the above group and many other organizations of disabled people came together and formed "The National Coalition to Establish Income Maintenance". This resulted in the establishment of a basic disability pension.

c) Protests against Inaccessible Buses: For over 10 years now, disabled people have begun to leave their homes in order to take part in community activities. Consequently, a growing number found they were refused rides on public buses. In 1977, in order to bring this to the public's attention, the Green Grass Association staged many public protests - halting buses - at Kawasaki Station. However, to date, nothing has changed.

d) Campaigns against Segregated Special Education: In 1979 the Special Education Law was implemented. The Green Grass Association and other disability groups organized a campaign against this law, on the grounds that it would foster disabled children's segregation.

e) The 1983 Japan/U.S.A. Seminar on Independent Living: Leaders of IL movements in the States were invited to Japan, and IL seminars were held in 6 major cities. We ourselves have held the "Kanagawa Seminar on Independent Living" every year since.

2) The Present Status, Characteristics and Issues of the Japanese IL movements.

a) Most activities are centered around community workshops run by disabled people: It is estimated that there are about 2,000 disabled people's community workshops in Japan. Only very few of those are run by disabled people providing IL services to other disabled people in the community.

b) These workshops are mostly providing only personal care services: The scope of these workshops is usually quite limited. The service most frequently offered is attending to people's personal care needs.

c) People with cerebral palsy founded the IL movement in Japan: The IL movements in Japan were started by people born with severe cerebral palsy, who were unable to work, and severely disadvantaged socially.

d) The disability movement isn't unified, due to the various groups differing beliefs and politics.

e) Disability groups face chronic financial shortages.

f) Lack of Governmental support: There is no financial support supplied to any IL center by the national government, the Ministry of Health & Welfare or local governments.

3) Japanese IL movements - Future Issues:

a) To create a nationwide network of IL service providers: Exchanging information on problems and service methods between IL service providers will help create better service provision and quality of service.

b) To secure financial assistance from national and local governments: Financial stability is required for IL programs and services.

c) Unification of the various disability groups and movements: There needs to be a nationally-organized unification of disability movements, in order to share urgent and commonly shared issues.

d) To establish a clear definition of what is meant by "independent living".


Sectoral Session A-4 Monday, September 5 14:00 - 15:30

NEW TRENDS IN BIOMEDICAL TECHNOLOGY

Chairperson: Dr.Yasuhiro Hatsuyama Director, Training Center, National Rehabilitation Center for the Disabled (Japan)
Co-chairperson: Dr.Ruza Acimovic-Janezic Medical Director,University Rehabilitation Institute Ljubljana (Yugoslavia)

THE NEW TRENDS OF REHABILITATION ENGINEERING

YASUHIRO HATSUYAMA
National Rehabilitation Center for the Disabled, Saitama, Japan


It may not too much to say that the progresses of the scientific technology in the latter half of the twenties century, especially realizing of optical fiber and developing of high performance computor, have been able to handle a great deal of information and has revolutionized of social life style.
Such progresses of high technology has made the socalled "Rehabilitation Engineering" (RE) has made available throughout the world in 1970's.
Prof. Kazuo Tsuchiya, Director of Rehabilitation Engineering of Labor has the following opinion for the purpose of RE.
1) To develop the rehabilitation equipments, prostheses, orthoses, etc. which can compensate physical impairments.
2) To give the ability to control these machines by the disabled persons with great ease.
3) To program the new man-machine system acts that it can perform the activity similar to that of non-disabled person.
4) To cooperate the circumstances for the rehabilitated disabled to be integrated in the society.
The contents of the RE are as follows.
1) Technology of rehabilitation equipments
2) Technology of the motion
3) Technology of muscle, nervous system
4) Environmental and educational technology
The Japanese Association of Rehabilitation Engineering was established in 1986 and it holds annual meetings.
The governmental organizations, especially, Ministry of International Trade and Industry, Ministry of Health and Welfare, Science and Technological Agency, Universities and Research Institutes have projects concerned with rehabilitation.
The results of RE have been reported at related academic meetings. But how to put those results into practical use for disabled persons is important. For example, about rehabilitation equipments, it is necessary to evaluate and remodel repeatedly before the practical use for disabled persons.
In this session, we would like to introduce present status of RE and how the efforts have been made to realize its purpose in each country.

Govermental Organization related to Rehabilitation Engineering
Govermental Organization related to Rehabilitation Engineering


THE CONTRIBUTION OF ADVANCED TECHNOLOGY IN THE FIELD OF REHABILITATION AND WELFARE

YUKIO SAITO
Tokyo Denki University, Saitama, Japan


INTRODUCTION

Today, the boundary range of the department in a college of science and technology which supports a rehabilitation engineering becomes wide. Until now, the departments of electrical, mechanical and precision mechanical engineerings have played an important role of a rehabilitation engineering. As a result of joining of information engineering and system engineering, new departments which concentrated energy on a boundary field have established such as mechanical-system, information system or mechanical electrical engineerings.
As the study of a boundary range has layed emphasis on a practical shape more than a basic shape, the interchanges of different fields have increased still more. For example, the utilization of a computer has changed to the understanding function more than the calculation function.
A robot has easily come into a human daily life with delicate movements from the automation of repeated work. A microcomputer has been carried by its miniaturization, and then has functioned to supplement a human function.
With above expanse of boundary range, a rehabilitation engineering field is bringing a direct effect to men by new combination technique.

APPLIED ROBOTIC

We will introduce a use of robot as a first combination technique. The journal of Robotic Society 1 (Vol.3, No.1) classified relations of robot and social life into 8 items as follows and examined the role of robot.
(a) Medical assistance (b) Living assistance (c) Recreation assistance
(d) Educational assistance (e) Welfare assistance (f) Services of amusements
(g) Substitution of repair and inspection (h) Work in bad environment
For example, as the movements required for the robotic aid of physically disabled persons;
(1) drinking (2) taking a meal by limited tablewares (3) talking over the telephone (4) helping the environmental control equipment etc.,
In general, the control of robotic aid is proceeded chiefly by a fixed program as well as a control of industrial robot.
For example, here is one problem. The robot cannot follow up the body change of patient because the coordinate systems of robotic aid and patient's body are independent. Figure 1 shows the coordinate systems of robotic aid and patient in a reclining bed. So that, this study has established new systems which put electrical inclinometer to the patient body, detected motion angle of the body, on the other hand put the same sensors as well as to the robotic arm followed up the angle from a relative angle.
By attaching inclinometers to a robotic arm and bed, we obtained the facility of adaptive control of a robotic arm and the possibilities of adaptive control in addition to fixed programs.

APPLIED MECHATRONICS

We have two kinds of poor postural problems. One type is inability to keep the same posture and the other is inability to keep balance when changing the posture or motion. For example, changing of walking or standing up from the chair. The objects of this study are handicapped persons who need a training to walk. This dynamic postural study was developed to evaluate mainly regaining capacity of postural control from off balance position when standing on the moving plate. Fig.2 shows a postural control system. The moving disk is driven by two kinds of motor systems which provide rolling and pitching individually. Then, we can provide any combined motion with the computer program and tentatively circle movement was programmed.
These motors with built-in microcomputer provides two functions; one is to move the platform as mentioned above and the other is to measure reaction forces and torque momentum of human body on the platform at the same time with velocity, position and torque feedback mechanisms.
The results are come out as the torque with the unit of kgf-m, which reflects the movement of center of gravity of human body closely. Angular velocity was first considered important and reaction to the faster velocity could be decisive to differentiate between normal and pathologic conditions. However, it was found that slower disk movements are difficult for the physically handicapped to keep balance continuously. It suggests that this postural platform can be utilized as one of the training machine.

APPLIED MICROCOMPUTER

Pocketable microcomputer control system used generally for artificial powered prosthesis and environmental control system have been developed.
Namely, the hybrid formation of this system has been performed to miniaturize and improve safety and reliability. For example, we have developed the totalarm electrical powered prosthesis with 7 degrees of freedom. It has been needed to develop a rigid shoulder mechanism with 3 degrees of freedom, hand mechanism usable for a daily various kinds of job, and a compact and highly reliable control apparatus. The merit of this shoulder mechanism is to be able to gain its maximum torque when upper arm is at the angle of daily movement, which is nearly 50 degrees. So that, a micromotor of shoulder can do with a small size.
The patients have various needs for the prosthesis because the environmental around them and their physical condition are different. To provide prosthesis in reasonably short period we introduced a prosthesis support system through the whole level of development.It is incluedes a support system from the planning to the fields test.
For many years we have been developed various types of prosthesis. At present, accordingly, our problem is how to select and arrange the control program pieces which is divided in module as a macro. Operation command apparatus and its command set is determined according to the degree of patient's ability and the jobs he/she wants by a repetition of IF THEN rule known as a technique in artificial intelligence.

APPLIED CAD/CAM

In the past, precise and automatic measurement on human body was considered technically impossible or extremely difficult. However, advances in measuring and information processing technologies have made it possible to undertake detailed measurements of any part of a living body.
We have designed a three-dimensional coordinate measuring machine coupled with a microcomputer and have performed automatic measurement of the human hand. Furthermore, we have used the same computer to process the observed data and manufacturing for a pair of gloves to be used with artificial hands.
Fig.3 shows an example of the measurement of a natural hand. We automatically measured about 5000 points, in each section interval 3-8 mm at a speed of 0.8s/point.

CONCLUSION

New techniques which support a rehabilitation will become profitable as
(1) Technical supports, which adjust to a difference of handecapped, is possible.
(2) If we measure a living body shape once as mentioned in CAD/CAM, we can simulate an optional living body shape. For example, plaster models have been used frequently in the past for manufacturing prosthetic devices.
(3) By using a computer, difficult functions for handicapped persons such as understanding, comparative or calculation functions can be reinforced.
(4) The practical use of boundary range is expected in the development of new rehabilitation apparatus.

REFERENCES

1) Y.Hasegawa, "Themes of robottics to be discussed social stand point of view" Journal of the Robotics Society of Japan,vol.3,no.1,pp.22-29,1985.
2) Y.Saito,"Robot manipulator aids syncronized with reclining bed" 2nd ISBMRE'86 pp. 319-325,1986.
3) T.Higashihara,et.al,"The development of a microcomputer-controlled electrical prsthesis with six degrees of freedom" IFToMM,7th World Congress,vol.3,pp.1841 -1844,1987.
4) Y.Saito,"Functional cosmetic hand designed by CAD system" Biomechanism 8,no.24 pp. 265-273, 1986.

Robotic aids
Figure 1 Robotic aids

Posture control system
Figure 2 Posture control system

Results
Figure 3 Results


THE EVOLUTION OF MODERN EQUIPMENT TO FACILITATE WORK FOR INJURED PERSONS IN THE FEDERAL REPUBLIC OF GERMANY

DIETER GREINER
Hauptverband der Gewerblichen Berufsgenossenschaften E.V., F.R.G.


The articles of equipment, which facilitate the work of injured persons or which even make work possible at all, are primarily orthopaedic aids, which support or replace those bodily functions which are impaired or which have been lost. Orthopaedic support occupies an important place in the rehabilitation of injured persons. Artificial limbs, supporting devices, wheel-chairs and other technical aids are indispensable for social as well as professional re-integration. In individual cases, it may be the case that the degree of success of integration or re-integration at work and in society is dependent on the quality of these aids.
Trade and industry are continually developing, producing and improving these aids. The competition between the numerous suppliers is an important encouragement for the continued development of technology.
The following important developments in the recent past in the field of orthopaedic support originated in the Federal Republic of Germany:

- the modular system (tubular skeletal system based on the "building-brick-principle")
- the manufacture of fitted parts for artificial limbs using Titanium as material
- the myoelectronic artificial hand

In the question concerning the use of materials, it is interesting that Titanium has proven to be disadvantageous in certain respects when used in supporting devices and it is also a relatively expensive material. Nevertheless there are new aluminium alloys which have their origins in space technology and which possess considerably better qualities than Titanium. These have recently been increasingly used for supporting devices.
There are special establishments which guarantee the quality of orthopaedic aids. Apart from a test-centre at the Technical University of Berlin, a centre which is operated using public funds, there is a Commission for OrthopaedicTechnology at the Ministry of Employment and Social Affairs. This is devoted to testing new aids for suitability of use and safety, for the field of social compensation, so that the Federal Minister of Labour and Social Affairs may make a recommendation concerning usage.
Apart from the quality of the aids, the basis for the top position of orthopaedic support in the Federal Republic of Germany, is the co-operation between all persons concerned. These are, above all, the prescribing doctor, the responsible craftsman, the physiotherapist, the occupational therapist and the handicapped person herself. An example for this optimal co-operation is the primary care of accident victims by the institutions responsible for statutory accident insurance, subsequent to amputations.
Just as important as expert care through the provision of artificial limbs as a prerequisite for re-integration into the working process is the adaption of the place of work to suit the handicapped person. This occurs through adaptation of the work place, working methods, the working surroundings and the way in which work is organized. Fundamental elements are above all ergonomic findings which are available in the form of rules, data or references which make work easier, not only for the handicapped persons but also for the non-handicapped. It is often the case, however, that the adaptation of work to suit handicapped persons requires additional and more extensive consideration concerning the facilitating of work and safety at work. Special measures have to be taken according to the type and degree of the injury and the demands of the place of work. A blind person, for example, has to rely on audible signals. To be sure that these are perceived it could possibly be the case that he requires a work place with a lower noise level than would his non-handicapped colleague. It can generally be said, that working aids for specific handicaps can be successfully employed, above all in the fields of communication and information, whereas most aids, which are designed to facilitate work can be of advantage to non-handicapped as well as handicapped employees. The advantage of conventional "wowking aids" for an injured person is also that his place of work is in this way not obviously characterized as a "working place for a handicapped person".
Apart from technical working aids at the place of work it is sometimes necessary to make structural alterations in the construction of doors, corridors, passenger-lifts and common rooms for the wheel-chair bound and the blind. If need be it may be necessary to undertake special measures concerning the form of influences from the surroundings - such as sound - proofing or air-conditioning.
In 1987, a handbook of technical working aids for work place layout was published in its fourth edition as part of the series of books by the Federal Institute for Labour Protection, its title "Arbeitsplatze fur Behinderte" (Work Places for Handicapped Persons). This standard work, which is produced with support from the Federal Government enables the location of the equipment required to equip work places for individual cases with the use of a special system.
A suitable place of work for the injured person is chosen and equipped in close co-operation between the responsible colleagues within the undertaking (personnel department, work's doctor, the experts for work's safety and organisation of work) and the handicapped person herself. Apart from this, the authorities for victims of war, the employment offices and the institutions responsible for statutory accident insurance also provide help and advice.
The facilitating of work for the injured person is, in the long run, unthinkable without the assistance of those responsible for rehabilitation. The handicapped person has a legal right to claim all benefits which are required to facilitate her work from the institution responsible for rehabilitation. The obligation of the institutions responsible for the statutory accident insurance to grant benefits "by all appropriate means" should particularly be emphasized here.
A hearing of German and foreign scientists, of manufacturers of orthopaedic aids, representatives from associations for handicapped persons, sickness insurance institutions, professional associations and the authorities for victims of war before the Committee for Labour and Social Affairs from the Bundestag of the German Federal Republic in 1986, resulted in the recognition that orthopaedic assistance within the Federal Republic of Germany, as has been the case for decades, occupies a top international position.
It is owing to the high standard of orthopaedic care and the services to aid the adaptation of work to the requirements of the disability that even severely injured persons such as the paralysed, mentally handicapped, the multiply amputated and the blind have a good chance of being re-integrated into the working process. More than 96% of all persons severely or most severely injured in accidents at work can reassume work subsequent to completing rehabilitational therapy.

Literature

Bundesarbeitsblatt 1986, magazine No. 3; "Arbeitsplatze fur Behinderte - Handbuch technischer Arbeitshilfen zur Arbeitsplatzgestaltung" (Work places for handicapped persons - a handbook of technical working aids for work place layout), 4. revised edition, series by the Federal Institute for Labour Protection in Dortmund (ISBN 3-88314-661-7)


COMPUTER AND ELECTRONICS FOR THE SERVICE OF THE HANDICAPPED AN OVERVIEW FROM THE U.K.

G.BUSBY,FBCS,M.A.
The British Computer Society, Essex, U.K.


The design of computer and electronic aids for the service of the disabled is at a fairly advanced stage in Britain. The provision, however, of these aids is not so advanced. If state provided, they are tied to the proviso that the applicant has employment and requires the equipment to carry out that job. This results in a catch 22 situation as not many employers are willing to take the gamble of employing a severely disabled person before obtaining the necessary equipment. Such a method of provision has the added draw back of not taking into account the social needs of the disabled and their careers.

This situation has improved slightly since June of this year, in that the amount of finance available to provide equipment or structural modifications is now limitless as opposed to the L6,000 which it previously was. Naturally an extremely good case has to be made in order to receive such assistance and the employers must be willing to pay a share of the cost. Provision of 'Aids to Employment' is therefore not ideal and is something which we could easily improve upon.

What is available in Britain? Infact we have a good deal of technology available to the disabled. I only intend to discuss the equipment which I consider worthy of mentioning. Firstly, in the area of employment the one single aid which gives most potential is probably the 'Head Start' System produced by BIT 32. The system allows all normal desk top software associated with the Apple MacKintosh machine to be operated in the following manner.


1.

An ultrasonic reference frequency is transmitted by the View Control Pack Unit and detected at three positions on the headset.

2.

As the user's head moves, 'Doppler effect' makes the received frequency appear to change for each detector.

3.

The three signals from the headset are sent back to the control unit and analysed to determine how the user's head position is changing so that the control unit can send normal 'Mouse' signals to the computer.

All standard Macintosh applications can be accessed by 'pointing' in this way, and 'clicking' with a mouth operated switch.

4.

The 'HeadLines' keyboard emulator can be resized, and provides all normal keyboard operations plus other functions. For example phone dialling, switching keyboard layouts and an alarm sounder.

The HeadStart equipment had the drawback of not being suitable for people with involuntary head movements. In an attempt to overcome this drawback I, and Tom, recently visited BIT 32. In one day, working with their Technical Director we managed to develop a joystick which with a piece of plastic tubing attached to the end, afforded a sufficient cushioning effect to negate any jerky movements. This emphasises a point which I am constantly making, that being, "Always involve the End User". An area which we, in the U.K., often fall down on.

Communication is of paramount importance to anybody and the lack of it is a severe disability. Voice synthesisers are fairly numerous in Britain now and it is difficult to pick the 'best on the market'. My preference lies with three systems.

The first system is the Toby Churchill Lightwriter SL4a which is a speech synthesiser with two displays, one for the user, one for the reader and an internal or external printer for notes, messages, letters or essays. The Lightwriter is very compact and portable. This system is excellent for users with good hand movements.

The other two systems are suitable for people with restricted or uncontrolled movements. These are produced by Liberator Limited and are called Touch Talker and Light Talker. The Touch Talker is appropriate for persons who can use a keyboard with their fingers, a mouthstick, or a headpointer. The Light Talker uses a light sensor to activate the keyboard. It is designed for persons without touch capabilities who have a single body movement that can be utilized; i.e. head movement, brow wrinkle, puff-sip, or the use of any controllable muscle.

The main problem when using computer technology to enable the disabled is always going to be the method of interface. In my opinion the method which holds most potential is voice recognition. Much innovative research and development in this area is being undertaken by Professor Laver, Head of the Speech Technology Group at Edinburgh University in Scotland. One hopes that his pioneering research will have spin-offs for the disabled.

At this stage I would like to make a point which I consider to be of paramount importance. This is, where at all possible, off the shelf Hardware or Software should be used even if minor modifications have to be made.

The British Computer Society is the Professional Body for Information Technology in Britain. It is presently involved in two initiatives which reflects their recognition of their ethical obligation to avail their expertise to benefit the disabled and also to increase the workforce available in the area of IT which is currently undermanned.

To emphasise my point, currently the unemployment figure in the U.K. is 8.4% or 2.375 million, with 255,000 unfilled vacancies. In the I.T. Industry, however, there is a shortfall of skilled personnel of approximately 50,000 and I suspect this anomaly is true, to a lesser extent for most of the Professions. We know that the Computer Industry and professions where the computer can be used as a tool are particularly suitable for disabled people. It therefore seems obvious to us at the British Computer Society to highlght this point. With the knowledge that the desperation for expertise will always be the singularly greatest incentive to employers more amenable to the idea of employing the severely disabled.

How has the B.C.S set about this task?

Firstly, the British Computer Society comprises of local groups of special interests and in 1975 the Specialist Group for the Disabled was set up, myself being Founder Chairman. It caught the imagination of many high level members of the Society and soon became one of their most thriving groups.

The principal aims of the group are as follows:


1.

To further employment opportunities for the disabled.

2.

To enlighten potential employers, and the general public, in the special needs, and the special abilities, of the disabled.

3.

To investigate and develop ways in which computer technology can aid the disabled in education, training and employment.

4.

To assist manufacturers to increase the marketability of their products by increased consideration of the needs of the disabled.

5.

To act as the main collector and disseminator of information in the field of computers and the disabled, so that the currently fragmented resources and efforts in this field may be brought together, and be more efficiently used.

6.

To initiate and foster links with similar organisations internationally.

A seventh has since become obvious, this being to make the disabled themselves and those caring for them aware of the potential that the computer holds for them and we are working hard to correct this oversight. I still find it incredible that the majority of the disabled in Britain and even more those responsible for caring and advising them, are totally ignorant as to the potential of computers.

Secondly, they have recently taken a further step by initiating a project called 'IT Support for the Disabled' and I am currently seconded from GEC Computer Services Limited to be Director of this project. The main objective of the project is to increase the awareness among employers to the potential of using High Technology as a means to employ more disabled. 'I Support for the Disabled' is therefore directly related to my previous comments on employment.

As Director my intention is to move in the direction indicated above by steering away from specially designed aids. By their nature they tend to be expensive, and we must look towards utilising normal equipment. To this end I shall be attempting to make manufacturers more aware of the needs of the disabled and encouraging them to include them in their initial design. The incentive to do this is that it increases their market, for most modifications required by the disabled are also helpful to the ordinary user.

The methods of dissemination by the project will be through workshops, Conferences and a quarterly journal which has a circulation of 45,000 within Industry. The journal 'Technology Support' in common with the Project is deliberately targetted towards Industry because there is a desperate lack of knowledge in this area which needs to be rectified. In Britain there is a statutory obligation for every employer to employ 3% of their workforce from the Registered Disabled. This is never met and the system has recently been labelled by a Government Select Committee as 'Unworkable'.

Although I realise that technology is not the panacea to all the problems of the disabled it does go a long way to increasing their quality of life, dignity and self-esteem.

To summarise, computer and electronic aids can afford the disabled the greatest emancipation since the advent of the wheelchair. In my opinion however, a multi-disciplinary approach needs to be taken in order that allied sciences, such as optics and robotics are included to produce equipment which is both appropriate and affordable.

Such a project is being instigated by me, and developed by Professor Koorosh Khodabandehloo at the University of Bristol. This project is to develop a robotic feeding arm, which will recognise and deliver food to the user. In my opinion this will have a profound affect on the lives of millions of disabled and their helpers throughout the world.

This project and all of my work is dependant on charity. I am sure that the majority of the work discussed at this conference will have a similar dependency. It would be a mark of achievement if we could prevent this from being so in four years time. I deeply believe that nobody's quality of life should depend on the whims of charity.


How HeadStart makes it possible for severely handicapped people to access more than 7000 standard Macintosh programmes and utilities.

How HeadStart makes it possible for severely handicapped people to access


LASER APPLICATIONS - A GROWING FIELD

JOHN EVANS
Director, Rehabilitation Engineering Institute, Hong Kong


Twenty five years ago the laser was a new and exciting tool looking for an application. The search has certainly been rewarded, as with so many applications it is difficult to know what we would do without it today. However, we may forget that some of the earliest applications were in the field of surgery and medical rehabilitation. Some of the results were very good, as in opthalmology, while others were bad or even disasterous. Partly as a result of the adverse publicity attaching to the very bad results and partly due to the highly empirical approach then being adopted, lasers were not readily accepted as therapeutic or medical tools. However, in the last decade, with the development of many new lasers and a better understanding of the effect of intense light on body tissues, there has been a revival of interest and a major commitment is being made on an international scale.

A new era is dawning, as we are now able to predict and encourage tissue reactions in the knowledge that equipment will be available to develop a practical technique. This paper is presented in the hope that it might encourage novel uses of lasers in the field of rehabilitation medicine, as this is an appropriate stage at which to take a fresh look at what lasers have to offer. Let us first look at some of the mechanisms involved in labour-induced changes in the body.

Predicting the Effect of Laser Radiation on Tissue

Laser can produce intense beams of monochromatic light either continuously or in short pulses. In most applications there are two principal factors which relate to inducing the necessary reaction in the desired tissues while producing a minimum of disturbance to neighbouring tissues. These are the "wavelength" and the "pulse length". At an appropriate wavelength the nature of the reaction will generally be determined by the intensity of the power delivered.

There are basically four different reactions which we need to consider: electromechanical, ablative, thermal and chemical. When the empirically observed reaction zones are mapped on the plane bounded by power intensity and interaction time, they appear moderately discrete. They lie in a band between the constant energy fluences 1 to 103 Joules per centimeter squared (Jcm2). Short interaction times with correspondingly high peak power densities produce electromechanical effects, whereas photochemical reactions may require very long exposure. Photothermal reactiona are primarily confined within the range lms to 1 second, although thermal "side effects" are commonly observed at both longer and shorter pulse lengths.

Many of the above reactions are not tissue specific and thus it is necessary to selectively interact with the "target" tissue by contrasting it with its surrounds. Each tissue or tissue component has a natural colour which is a reflection of its absorbtion spectrum. For example, blood, which is red, absorbs maximally at 418 nm (nanometers), which is blue, and has a lesser absorbtion peak at 577 nm. If a tissue does not naturally contrast adequately with its surrounds then it may be possible to colour it artificially with a pigment (chromophore).

It is now possible to generate laser energy at many wavelengths in the ultraviolet and infrared as well as across the entire visible spectrum. The problem is to identify the optimal wavelength and to engineer the delivery system. Fibre optics are frequently used to guide the light but they do have their limitations.

In most applications the target material is not exposed on the surface of the body and thus laser light will have to penetrate overlying tissues in order to reach the target. On entering a tissue and in passing through it, light will be subjected to reflection, refraction, scattering and, eventually, absorbtion. A good example of an organ commonly treated is skin. This is a multicomponent tissue with very different scattering and absorbtion coefficients in the overlying epidermis, the fibrous-protein dermis and the blood.

Although analytical solutions to the problem of light distribution exist for simpler models, we have chosen to use a statistical model, based on the Monte Carlo method, for organs as complex as the skin. This treats the incident light as a large number of small packages, photons, and summates their histories from incidence to absorbtion. Each history is simulated using pseudo-random numbers to determine those aspects of a photon's behaviour which are governed by probabilities - for example, the scatter path length and direction.

The sites of absorbtion determine the initial energy distribution and this can be seen to be highly dependent on the relative magnitudes of the absorbtion and scattering coefficients, even in a homogenous material.

Recent Developments in Application

There is such a wide range of potential and proven applications that it will be useful to illustrate the scope and utility of this relatively new technology.

It is possible to change the focus of the eye by machining the cornea with a laser. The cornea can be recontoured to within a micrometer using an excimer laser emitting in the ultra violet. The tissue is subject to photoablation and a negligible amount of heat is generated. A complete, painless reshaping - the equivalent of a permanent contact lens - can be accomplished under computer-control in under two seconds.

Equally, kidney stones can be safely shattered in situ and it is possible to remove the plaque which could block coronary vessels.

Lasers are now well established as a safe and efficient means of stopping internal bleeding, particularly in the stomach, and they are now finding an application in "welding" or joining blood vessels and other tissues.

Owing to the specific photochemical reactions that can be elicited, lasers and light delivery systems are now being developed to destroy malignant tumours in organs such as the lungs, liver and brain. The principal technique being utilized is that of "photodynamic therapy" in which the aberant cells are labelled using an added chromophore and subsequently irradiated at the appropriate wavelength.

The remaining two examples are applications related to the skin, and will serve to illustrate the utility of the modelling technique in optimising the laser-output characteristics for very different applications in a complex, multicomponent tissue.

Applications to Skin

The distribution of energy in skin can be computed for any chosen wavelength of incident light. This distribution, which is multidimensional, can best be illustrated as a plot of energy intensity over a two-dimensional section of the tissue.

The skin model is ascribed pertinent dimensions and the laser beam is considered normally-incident on the outer, epidermal, surface of the skin. The resulting energy distribution is depicted as a profile where the height corresponds to the local energy intensity.

Probably the most commonly used lasers in the medical field are the carbon-dioxide and the argon ion.
The argon laser light, green/blue, is fairly highly absorbed by the pigments in the epidermis but penetrates down to the blood vessels. It is, however, absorbed diffusely and not exclusively by the blood.
In contrast, the infrared radiation from the carbon dioxide laser is almost totally absorbed in the outer part of the epidermis. The effect, which is primarily heating, is confined to the surface of any hydrated tissue.

Two particular applications illustrate the predictive utility of the model. These relate to the removal of Port Wine Stains and tatoos.
The Port Wine Stain is of the class haemangioma and comprises aberant, dilated capilliaries in the dermis which give rise to the wine red appearance of patches commonly found on the head and neck. The desired objective is to destroy the aberant vessels and to reduce the potential for recanalisation by inducing an appropriate degree of perivascular connective tissue damage and contraction.

The blood vessel walls are not optically differentiable from their surroundings and thus cannot be targeted directly. The choice is either to label the vessel wall and perivascular tissue with an added chromophore or to utilise the blood as the optical target.
Blood has characteristic absorbtion peaks at 418nm and 577nm and it is relatively most absorbent at 418nm. However, due to the scattering of light in the dermis it transpires that 577nm is the theoretical wavelength of preference. Clinical investigations at this wavelength suggest an optimum pulse length of 100ms (microseconds) and an energy fluence of 10 Jcm2.

A clinic has been established using a flashlamp pumped dye laser and microprocessor-controlled beam-scanning system.

The carbon-based tattoo has obvious potential for phototherapy as the obvious target-material is an added chromophore which is not only optically different from its surrounds, by design, but is also a broad-band absorber.

In order to optimise the contrast between the tattoo pigment and the surrounding and overlying tissue, a wavelength is chosen to correspond with the minima in the absorbtion spectra of the naturally occuring chromophores. The effective "windows" in skin occur at around 700nm and in the near infrared. The most obvious lasers to use are the ruby, at 694nm, and the Neodymium: YAG, in the near infrared. In more highly pigmented skin the Nd:YAG has a theoretical advantage but in pale skin the advantage is marginal.

A ruby laser clinic has been established for irradicating tattoos. Professional tattoos do respond but amateur tattoos in young adults receive most attention. The reaction underlying this therapy is primarily mechanical and requires short pulses of 30ns (nanoseconds) duration.

Summary

In its relatively short history the laser has made an immense contribution to our well-being. Its contribution in the medical field, in general, is expanding rapidly, partly due to the rational, predictive approach which can now be adopted in contrast to earlier enthusiastic empiricism.

Laser techniques, as currently applied in the process of rehabilitation, are quicker, cleaner and more precise than those they replace and are generally far less demanding on both the operator and "patient".

Perhaps you have a good application for lasers in your field of rehabilitation? - please think about it.


Sectoral Session A-5 Monday, September 5 14:00-15:30

LEPROSY:DISABILITY PREVENTION AND REHABILITATION

Chairperson: Dr. Sharad Gokhale Chairman, Rehabilitation Co-ordination India (India)
Co-chairperson: Dr.Kazuo Saikawa Chairman, Okinawa Hansen's Disease Prevention Association(Japan)

PREVENTION OF PHYSICAL DISABILITIES DUE TO LEPROSY

CHIKAHIRO NAKATANI
National Leprosorium Hoshizuka-Keiaien, Kagoshima,Japan


The number of leprosy patients in Japan shows an annual decrease, at present there are 8,000 patients. The majority of these patients are over 60 years of age. About 80% of these people live in the 13 National Leprosoria. Therefore, candidates for reconstructive surgery and rehabilitation to correct physical disabilities are scarce. Like any other elderly person the leprosy patients require treatment for general diseases such as heart disease, cancer, etc.
There are two types of physical disabilities in leprosy- primary disability and secondary disability. Primary disability refers to nerve disturbance (sensory and motor disturbance and sympathetic nerve involvement) and also facial deformity due to inflammation of the skin. Secondary disability is A) visual disturbance, B) contracture and deformity of extremities and C) ulceration of extremities.
My report deals with the above disabilities as now currently existing in Japan. In regard to primary disabilities, I teach the patient to avoid strenuous labor. If acute neuritis does occur, rest of the affected part, especially by application a splint is most effective. In the case of progressive and painful neuritis, neurolysis through microscope is performed. Purpose of neurolysis is decompression by epineurium incision of the nerve trunk. Sometimes the funiculi are also incised to further decompress the nerve. At the present time young patients are few in number therefore this type of operation is scarce. After neurolysis nerve pain is completely gone.
In regard to secondary disability, the most urgent problem is the visual disturbance. Blindness may result if treatment is not given promptly.
A) visual disabilities are for the most part, the result of lagophthalmus, causing cornea inflammation, ulceration, and opaqueness of the cornea. The patient's chief complaints are pain, tearing and problems of cosmetic nature. Unfortunately if blindness has occurred correction of the lagophthalmus is still effective to reduce pain caused by exposure of the cornea. In order to prevent these visual problems reconstructive surgery to correct lagophthalmus is performed. To correct lagophthalmus I had used skin flap, skin graft, and static suspension. However, even after this type of operation lagophthalmus sometimes reoccurred. Recently I have used temporal muscle in a dynamic suspension (Johnson's method). Reconstructive surgery for lagophthalmus depends on levator palpebrae muscle power and the amount of cornea opaqueness. Immediately following surgery the chief complaints are greatly diminished and sometimes disappear completely. When the patient is shown a slide he is able to open and close the eye lids. When the eye lids are closed there is still a small opening, but the results of the operation provides adequate protection for the cornea. As a result of this operation, ulceration and inflammatory symptoms of the cornea and conjunctiva are lessened and further eye involvement is prevented. Visual ability is also slightly improved in some cases.
B) Contracture: 1)Before contracture occur, physical therapy is begun. This prevents skin and tendon shortening and joint contracture. 2)For slight or moderate contracture, operation is indicated.
C) Ulceration of extremities: The blood vessels in paralyzed skin are very narrow. If we incise the sciatic nerve of the rat we can observe the same phenomenon. The blood circulation of paralyzed skin is poor. The skin is especially sensitive to the application of heat and even ordinary pressure. Erosion, ulceration and burn easily occur. To prevent ulceration, blood circulation should be improved and weight bearing on the affected part lessened.
Patient Education; 1) Hand and foot inspection. 2) Physical therapy. 3) Foot wear. Firstly, to improve blood circulation, hand and foot soaking in warm water and paraffin treatment is recommended. Especially bathing feet and hands in warm water is the best way to increase the blood circulation but also to cleanse the wounds. If this treatment is followed, ulcers and calluses will be prevented. To lessen the weight bearing, thick socks,and shoes with soft insoles or thick soles(such as tennis shoes) are recommended. High heeled sandals are prohibited. I recommend thick pads and protectors to protect the knees, elbows,and ankles.
Chronic, recurring plantar ulcers in working people often result in severe deformity and even amputation if treatment is not sought. In the case of chronic recurring ulcer of the foot, weight bearing is further reduced by sole insertion, ankle-foot orthosis(AFO) and patellar tendon bearing(PTB) brace application. For slight plantar ulcer a simple sole insertion is used. In Japan, because of the custom of removing shoes when inside the house, a sole insertion brace is used for severe plantar ulcer.
Drop foot will cause toe wounds and deformities, and will also destroy the ankle joint resulting in a Charcot's joint. Simple drop foot in the elderly patient is treated by plastic spiral AFO and short plastic AFO. Drop foot complicated by ulcer and deformity is treated by sole insertion and plastic AFO. The plastic spiral AFO is particularly useful on steps, slopes and inthe Japanese style toilets. It allows for flexion.
In severe talipes varus, Charcot's joint and small foot, amputation was the procedure of choice in the past. But now we use PTB brace which allows patient to ambulate while receiving treatment. Amputation of the lower leg is now rarely done. Even in severely deformed patients application of the PTB brace allows them to live a normal life and they can enjoy some traveling.


LEPROSY DISABILITY PREVENTION AND REHABILITATION

S.D.GOKHALE
Chairman, Rehabilitation Co-ordination India, India


Leprosy - and in its turn, deformity and disability - brings about deeper, more fundamental changes in the character, personality and attitude of people than war, natural calamity or poverty. These changes remain even after the people are cured. Life will always be different to them because they have been "there" and back. This change goes beyond the initial reactions of incredulity, outrage, terror and self-loathing. It is a change in the initial, intricate human being. It is much more than a change of attitude, it is a change of soul.

To understand leprosy you must have it; the next best thing is to live with people who have it. I lived for an unforgettable number of years among people who had leprosy. This period of life with leprosy was a watershed in the lives of everyone of them.

In the spacious grounds where I work there is a wide variety of trees which, when I'm in a pensive mood, recall to my mind the patients I met there. There was the gentle patient, expansive like the sprawling tamarind, and another like the tall fir, solitary and uncommunicative. Some could be sensitive like a delicate plantain bush, and one - having known the desolation - was moody, like a sombre mangrove at night. Maybe people are human versions of trees...?

Trees die in many ways. Some are uprooted by storm and come tearing out of the earth; some go hollow with disease and they die slowly, wasting away branch by branch. But the life of a tree is not easily given up. It fights. A tree is tenacious, its will is strong and its anchor deep in Mother Earth. People are like trees. When it seems as if everything is lost, there is still life and the love of life and hope.

In the field of leprosy there is little pretense, no sophistication, dishonesty or concealment. Here we deal with raw human emotions which exist on the bedrock of life.

Present Status

WHO estimates that there are between 10 - 12 million leprosy cases in the world, and at least a quarter of them have deformities.

Leprosy is a far more serious problem than the sheer number of cases implies, since disfigurement from the disease leads to serious psychological, economic and social difficulties for the patients, particularly as a result of the social stigma against the disease prevalent in many societies.

Multi-Drug Therapy (MDT) no doubt involves drugs which are expensive; however, the treatment periods are much shorter compared to the days when dapsone was used, in some cases, for life.

In recent years great progress has also been made in the development of a vaccine against leprosy, which is currently undergoing field trials in Venezuela and Malawi. This very promising development is the result of work undertaken by the International Research Network on Immunology of Leprosy. (IMMLEP).

Impairment, Disability & Handicap:

Impairments: Concerned with abnornalities of the body structure and appearance, and with organs of system function, resulting from any cause; in principle, impairments represent disturbances at the organ level.

Disabilities: Reflect the consequences of impairments in terms of functional performance and activity at the level of the person.

Handicaps: Concerned with the disadvantage experienced by the individual as a result of impairment and disability; also reflecting interaction with the adaptation to the individual's surroundings.

Rights of the Disabled

At the XIXth session of the UN General Assembly in 1975, the Declaration on the Rights of Disabled Persons was adopted. This proclaimed that disabled persons:

"...have the inherant right to respect for their human dignity...", that they

"...have the same civil and political rights as other human beings...", they

"...have the right to economic and social security and to a decent level of living...to secure and retain employment or to engage in a useful, productive and renumerative occupation and to join all trade unions..."

Unfortunately, there are too many laws in many countries which do not grant this equality to disabled persons.

The movement towards rehabilitation of the disabled arises out of the understanding that the handicapped person is an individual with full human rights, entitled to receive from his country every possible measure of protection, assistance and opportunity for rehabilitation.

Rehabilitation has Two Goals:

- To provide every person with services aimed at preventing the appearance of possible disabling conditions, and to give all necessary treatment to lighten any disability, to develop the patient's remaining abilities to the highest possible level.
- To provide society with a means of regaining the disabled person's economic contribution and/or reducing the cost of institutional care, sickness benefits, disability pensions, etc.

The Situation in Developing Countries

It is a sad fact that in developing countries the majority of disabilities are preventable, being generally related to poverty, disease, malnutrition and ignorance. Most of the population in these countries is rural, agrarian-based. Insufficient resources for medical prevention and care result in a high prevalence of infection and disease, leading to physical or mental impairment and disability - as in the case of leprosy.

In rehabilitation efforts that have been made so far, the tendency has been to isolate the disabled: soecial institutions, special classes for children and special places of work - the so-called "rehabilitation" methods used have uprooted them from their community. Added to this is the expression of attitudes in our day-to-day living, which are based on the assumption that the disabled do not exist: public transport, public buildings, shopping centres, roads, pedestrian crossings and so on, have been so designed that they succeed
in preventing the disabled from using them - or at least in making them difficult for the disabled to use. This kind of prejudice has to be worn away from within, and this change can be effected only if the community is exposed to well-planned information campaigns using all the media, as well as person-to-person contacts.

It has been the Western model and practice to lift both the problem and the person out of the social context and to attempt to find a solution in a closed setting. We have only slowly learned that a person with a disability is also a person. Therefore, to uproot a disabled person from his family is likely to endanger his future.

Ignorance regarding Leprosy and Disability:

There is an abysmal lack of accurate information about disability, its causes and consequences, and about what we can do about these things. Also an equally appalling wealth of misinformation, prejudice, superstition and fear. This is a major factor in the family's inadequate reaction to the problem when it arises; it is a fundamental reason for the community's ostracizing of individuals and families that are affected with disability due to leprosy. This misinformation exists in all echelons of government, from village chief to minister, and is endemic in the representatives of international organizations advising on the priorities of development, and administering international assistance.

Rehabilitation and its Application to Leprosy:

The word rehabilitation has been used for many years in connection with persons handicapped from causes other than leprosy. Its use in leprosy work is comparatively recent. In applying "rehabilitation" to this work, however, a distinction between leprosy-handicapped and other handicapped persons has been overlooked. Whereas most handicapped persons are not normally viewed as social outcasts, ostracism seems to prevail in the case of leprosy patients. Consequently, the question of social acceptance does not arise in rehabilitation of the blind, the deaf or the orthopedically handicapped. They usually remain in their own homes, vocations and society. However, leprosy patients are often not accepted if not uprooted from their social milieau, and a process of de-habilitation keeps pace with the disease.

Stihma - What it Means:

By "stigma" we mean that marking or characteristic that disqualifies someone from full medical acceptance. Erving Goffman describes a stigmatized person aptly as one with a "spoiled identity". Originally the term "stigma" referred to boidily signs designed to expose something unusual and bad about a person's moral status. It referred to a blemished person to be avoided, especially in public places.

The are three different types of stigmas: first there are the abominations of the body - various physical deformities; second, character disorders are inferred from a known record of mental illness, imprisonment, etc; third, stigmas are associated with race, religion and colour. Thus, in effect, some people may be doubly or triply stigmatized.

Varying Degrees of Stigma:

The socio-economic stigma on leprosy tends to vary in intensity in accordance with the type of society, country and community. Even within a single country, as for example, India, social stigmatization appears in varying degrees in various parts. Ostracism may also vary according to the impact of the patient's disease. In some areas, only patients with gross deformities may be ostracized, whilst in others even an early skin patch could lead to ostracism if it becomes known.

Stigma has a hierarchy within those stigmatized, as well as those not stigmatized. For instance, the physically disabled are viewed as less discredited than the mentally ill. Social class factors also have an influence - generally, less stigma is attached to a disability if it is caused by war rather than disease.

Our concern for stigma is because it starts the process of de-habilitation. Whilst corrective surgety can remove the reason for stigma, social acceptance can only come through health education, change of attitudes and retraining of the disabled, coupled with effective use of social work techniques such as case work, group work and counselling.

Corrective Surgery in Leprosy:* (*Dr.N.H.Antia)

Deformity in leprosy is of two main types. The first is that which occurs during the activity of the disease, and is directly attributable to the disease process. This is called Primary Deformity.

Secondary Deformity, on the other hand, may occur at any time after the disease is completely cured after the active disease process has ceased. It is commonly the result of injury occuring in the fingers and feet because they have lost sensation, and hence have no protective defence against harmful external forces. These injuries frequently become deeply infected, penetrating the bone. The infected bone - usually the finger tip - then dies and is extruded, resulting in shortening of the finger.

Primary deformity is the field in which there is a very real place for corrective surgery. It is generally recognised that about 20 - 25% of all leprosy patients suffer from deformity of the hands, feet or face. There are estimated to be about three million leprosy patients in India today. This means that there are approximately 600,000 patients in India with some visible deformity.

Disfigurement:

Leprosy primarily affects the nerves. The nerve damage is irreversible, as the nerve cells do not have the power to regenerate. This results in damage to hands and feet.

Deformity in the face involves:

a) Loss of hair from eyebrows and eyelashes.
b) Damage of the facial nerves, resulting in paralysis of the muscles due to the destruction of the bony and cartilaginous septum of the nose.
c) Lax and loose skin around the mouth, and elongated and dangling ear lobes.

Stigma and Deformity:

The stigma of leprosy is the stigma of deformity. Although, in a large proportion of cases, arrest or cure can be achieved without significant deformity, the very name "leprosy" conjures up visions of hideous deformities of the face, hands and feet. Were it not for these deformities, leprosy would be considered no more than any other skin or nerve problem. So deep-rooted is this stigma that it makes the sufferer an outcast from society. Leprosy is hence as much a social problem as it is a medical or surgical one.

A study by Dr.A.H. Antia indicates:

"Deformities of the Face:

The deformities in leprosy are restricted mainly to the face, hands and feet. Most leprosy patients will admit that an improvement in appearance is as important as an improvement in function.

The most evident of all deformities in leprosy are those of the face. Fortunately these deformities lend themselves readily to surgical correction and, however hideous the deformity, there is no face which cannot be reconstructed to normality. Since rehabilitation in leprosy is so closely related to the psychology of deformity it presents a most rewarding field for the plastic surgeon.

The important features of this analysis are:

a) The total incidence of deformity in leprosy is high.
b) Facial deformities are commoner than those of the hands and feet.
c) Lepromatous leprosy presents a larger number of facial deformities. Tuberculoid leprosy is accompanied more often by deformities of the hands and feet.

Types of deformity:

1) Depression of the nose.
2) Lagophthalmos.
3) Loss of eyebrows.
4) Sagging of the facial skin.
5) Deformities of the ear.

Damage to the nose is probably the most distressing deformity in leprosy and the one most likely to draw public attention. It is involved in 25% of all cases of facial deformity.

The effect of rehabilitation of a facial disfigurement does not need elaboration. Good surgical treatment may be the means of the individual's complete return into their society."

Thus rehabilitation can conquer disability and deformity with the help of surgery, accompanied by occupational and physio-therapy, nursing and social work. Vocational training and counselling are next steps.

Lessons From Leprosy Work in India:

It is instructive to see just how much the profile of this disease has changed in the past two decades, when a national control programme has been in operation. The estimated number of leprosy cases was 2.5 million in 19 but 3.95 million in 19 . The prevalence rate for the country was computed at 5.7 per thousand in 1961 and 5.1 in 1987. The number of leprosy control units increased from 134 in 1961 to nearly 400. Also, the number of centres engaged in survey, education and treatment rose from 194 in 1961 to almost 7,000.

First, it has been demonstrated that infection can be ended, deformity and disability prevented and the disease cured by regular treatment at one's home with some precautions, and without risk to other family members or the neighbourhood. Second, certain daring individuals have attempted and achieved the impossible by venturing beyond treatment and organizing leprosy patients to be productive, and restoring to them the dignity and equality denied by society. If experience is any guide, the shift from hospital to home, from asylum to community, can come about only as a consequence not so much of government policy as of public opinion and group action.

The Work of the Gandhi Memorial Leprosy Foundation (GMLF):

It is in changing public attitude and community behaviour that organizations like the Gandhi Memorial Leprosy Foundation (GMLF) have a role and can find fulfillment. The 36-year experience of GMLF in its rather unique national role sheds useful light on the tortuous course of India attempts to contain leprosy. Among the many memorials to the Mahatma, GMLF's work should come closest to his heart. One is reminded here of the words of Vinoba Bhave, Gandhi's spiritual heir:

"The Foundation (GMLF) aims at so doing this work that the need of theFoundation will be over in the shortest possible time".

Perhaps a clear perspective on possibilities can be gained from the experience of the Wardha district, which has had a high prevalence rate and a number of active anti-leprosy agencies and projects. It has some 960 villages with a population of about 900,000. GMLF is active in about 30 of villages.

In these particular villages, a combination of survey, treatment, health education and community awareness has brought down the prevalence rate from 10.43 per thousand in 1980 to 3.75 in 1984. The rate of new cases detected has dropped from 2.24 to 1.63 over this period. Also, infection has been contained and incidences of deformity stopped during the past 10 years. Instances of such as divorce or abandonment as a consequence of the disease have become extremely rare. A multi-drug regimen in the district was started under government auspices, following the screening of the entire population between 1981 - 83. As a result of the multi-drug therapy - as well as collaboration with the World Health Organization, the mass media and representative bodies in the political and professional fields, over 90% of infectious cases have been cured. Now the focus is upon curing non-infectious cases and breaking the transmission chain.

GMLF has made a significant contribution to establishment of S.E.T. centres, development of training programmes for doctors, health educators and social workers. It has now submitted a Master Plan for Health Education for Government of India. It has set up a Social Science Research Centre to study social aspects of leprosy. It has also established an International Gandhi Award. It will set up a Histopathology Centre this year. Now a District Rehabilitation Centre for the Disabled is on the planning board.

Likewise, experience shows that anti-leprosy work - like other human development concerns - calls for a broad spectrum approach. The vacuum at the village level which leaves leprosy-affected persons high and dry, can be filled only by local groups of sensitized citizens viably linked to voluntary agencies. For this to happen, anti-leprosy work must become a part of the consciousness and development of the village community. Some of the GMLF villages present this promise to the whole country. Thanks to the quiet work over the decade which asks for nothing in return.


SOCIAL AND ECONOMIC FACTORS: DISABILITY PREVENTION AND REHABILITATION

RAM BELAVADI
Secretary,Center for Research and Development,India


I am happy that social scientists and medical professionals have started the dialoging about social and economic aspects of leprosy. I personally feel it is a good beginning to ending leprosy and consequent emerging issues. Till recently leprosy in general was no man's field; in the sense that social workers or missionaries felt it was the baby of medical professionals. Medical personnel thought that it was the concern of social workers. Medical personnel try to understand all factors related to epidemiology and transmission of the disease and to deal with the problem through therapeutic intervention. Social workers efforts and appeal are on the humanitarian front - asking people to sympathise with lepers and accept them in society, allow them to live and let live. Thus the baby remained neglected, particularly when the baby needed care, concern and communication. Therefore, I say that it is a good beginning and encouraging sign, when WHO took lead in bringing social scientists and social workers, medical professionals closer on a common platform to deal with the leprosy disease and diseased.

Leprosy is comparatively concerned more with social and economic factors than any issue concerning human field. It is so because leprosy disease covers broad issues like religion, social, medical, economic, political, education, communication etc.

1. Religion - since its diagnosis, people at large and leprosy patients in particular has a deep conviction that it is due to past or present sin they suffer from leprosy. In Indian scriptures or religious literature, we find people have been cursed to suffer from Leprosy (Maharog). As the origin of this disease is traced to religious field, sufferers take to performing religious rites rather than medicine.

2. Social - because he is ostracized by society, including his family members, kith and kin. He is not allowed to live in society and participate in social functions. He and his family are both affected.

3. Economic - because he loses his earning ability and opportunity. He is thrown out of his job if he has one, and if he is self-employed his goods are not purchased or marketed.

4. Political - because the leprosy population numbers 4 million in India alone. India is a democratic country and votes are more important than thoughts. People can politicize this disease in their own way.

5. Education - because the solution of leprosy problems emphasizes proper education of the public, sufferers, government and other social bodies. Many misconceptions, prejudices and beliefs present problems for the leprosy eradication program. Therefore, education has a major role to play in this.

Communication: In a large country like India, the spread of the disease is exacerbated because of lack of and inadequate communication. Therefore, leprosy and all its related issues need to be studied in more depth and breadth.

It is estimated there are 12 million leprosy cases throughout the world. The following is a breakdown showing figures in million:

Africa .......... 3.5 million
America .......... 0.4 million
South & South-East Asia .......... 5.35 million
Europe .......... 0.025 million
Eastern Mediterranean .......... 0.25 million
Western Pacific .......... 2.0 million

India itself is estimated to have about 4 million leprosy patients. Nearly 15 - 20% of them have deformities. In addition to this, India is a large country, with a population of 800 millions. Its educational level is 36.17% (male 46.74 and female 24.88). Road and communication systems are not well developed. Financial resources are meagre. In view of these constraints, one has to examine different strategies to be adopted in achieving the eradication of leprosy.

Whilst different strategies are being adopted, prevention of disability has been considered uppermost in the program. There are three types of disabilities:

a) Physical disability - which includes eyes, nose, hands, feet, fingers, etc.

b) Social disability - which means people consider leprosy as a transmittable disease, contagious, infectious, etc. As a result, people with leprosy are shunned. They are prevented from taking up or participating in any social functions such as marriage, social clubs, ceremonies, etc. Stigma plays a very important part in ostracizing them.

c) Economic disability - this arises partly from physical disability and partly from social disability. Physical disability because they are not in a position to work or function as a wageearner. As such, earning capacity is limited or restricted. They are not allowed to get or retain any job. Thus they are driven to begging, mendicancy, etc.

This leads us onto issues:

Prevention and Correction: Prevention is better than cure. But looking at the size and magnitude of the problem, the lack of financial resources, and the immense geographical area combined with the lack of communications, etc., the stress has been on prevention and treatment.

Survey detection of cases, education of the community and treatment of every known patient was advocated, first by G.M.L.F. Government of India and other governments later on accepted this approach on a large-scale. Recently, multi drug treatments have also been advocated, along with S.E.T. and rehabilitation programs. 48 districts in India are under M.D.T. programs covering a population of about 98 million with 1.4 million cases of leprosy.

Similarly, there are as many as 60 million people covered under the S.E.T. program. 75 reconstructive surgery units and 11 leprosy rehabilitation promotion units are functioning under the National Leprosy Eradication Program (NLEP).

Leprosy Rehabilitation Program Units (LRPU) aims at providing vocational rehabilitation as well as facilities for the surgical correction of deformed/disabled leprosy patients. It is roughly estimated that per head, per year expenditure in such rehabilitation centres offering such surgical correction facilities will be Rs. 625. Thus, it is clear that poor countries like India cannot afford this. There are about 8,00,000 (lakhs) people with disabilities.

There is another experiment conducted by Poona District Leprosy Unit in the field of rehabilitation....

Rehabilitation was first used particularly with those who had been physically disabled by war. Later, it was used with refugees. Now this is considered for use with people with leprosy. Rehabilitation of physically disabled people was limited to medical and vocational rehabilitation. However, leprosy rehabilitation will need not be complete without social rehabilitation also.

Rehabilitation thus means not only the restoration of normal economic activity, but also to bring people back into the mainstream of social life. Although medical and reconstructive surgery are necessary for the person's physical rehabilitation, they must be accompanied by efforts at socio-economic rehabilitation. This involves the patient resuming their rightful place in the community. Once the family is assured that their member is an economic asset and self-supporting, there is less likelihood of rejection. Vocational and economic rehabilitation facilitates social reintegration.

To achieve this end, it is necessary to build up the individual's sense of self-esteem and belief in their ability to work, which may have been damaged by years of rejection. Vocational training is necessary for those who have lost their means of livelihood, either through disability or stigma.

Poona District Leprosy Centre has launched a unique approach to the problem. This particular vocational training project for the disabled was started in 1977. They give industrial-based vocational training to ex-leprosy patients. Under one roof, there are people with orthopaedic disabilities, and also non-disabled people with socio-economic disadvantages. This has enabled a faster process of social reintegration.

Some experiments have been made with regard to community participation in Turkey and other countries. It has been observed that the social and economic situations of individual patients plays an important role in the effectiveness of these programs. Patients who had the opportunity of primary or secondary education which enabled them to get simple jobs such as village headman, shepherd, postman, travelling salesman, etc. - or their wives with leprosy - or patients who are farm-owners, producers or merchants with good income - or their wives - could take regular medication, follow instructions, and read books about leprosy prevention. Consequently, they had fewer disabilities and suffered less physical deterioration. It is also noted that stigma problems do not arise when there is little or no disability, patients could be accepted as part of the community.

In comparison, it is observed that it is very difficult to apply continuous treatment and rehabilitation programs to patients living in very extreme climatic conditions - where the land is unfertile, production capacity and income very low, and illiteracy widespread. Usually when younger, these people work in agriculture, often in a rich farmer's fields for many years, without consideration of their special situation or care needs. They never earn enough money to ensure their future and end up with severe deformities. The increase of deformities in patients living in these regions creates harmful problems of stigma. This is true in respect of the situation in India also.

If economic factors dominate social factors, we should aim at improving the economic condition of the patient before deformities develop. We must ensure that diseases are diagnosed rapidly, and make early treatment available nearby so that it can be started early as possible, to ensure deformities don't develop and consequently social stigma is not faced. A post-treatment program is more difficult and costly.

As said earlier, reconstructive surgery must follow vocational training or trade-training which enables someone to make their living honourably. Vocational training must take into account the residual capacity of hands, feet, eyes, etc., as well as the intellectual ability to follow a course, duration of course, educational background, social status, attitude and aptitude. Vocational training centres must be equipped with safe and suitable machinery. The user must be told how to take care of their limbs and protect them from injury.

There is also a need to study cost effectiveness of vertical programs. Similarly, a cost effectiveness study of leprosy control through primary health care also gives us an idea about the economics of leprosy control programs, through Primary Health Centres. The time has come to know and reduce the costs, maintaining effectiveness, whilst following different strategies to eradicate leprosy. This may be done by giving due weightage to either rehabilitation programs, M.D.T. programs, hospitalization or colonization etc.

India has one-third of the world's leprosy patients, whilst its economic resources are very limited. In view of this, it has to examine various economic factors which affect leprosy patients in particular and leprosy eradication programs in general.

There is also a need to develop and produce different types of gadgets, which people affected by leprosy - with or without deformities - may use daily. We need to examine the ways in which deformities as such affect work performance; also the effect cosmetic changes have upon the finding of work or achieving of social relationships. Gadgets or assistive devices would be a great help in work situations and also in preventing further deformities.

I would advocate for a strong program of research and use in the field of the manufacturing of such gadgets. Devices suited to all occupations in rural/industrial areas; gadgets for the young or old matched to their particular need; devices useful in both developed and developing areas. The study would involve different types of assistive devices suited to different peoples' needs and situations - in rural or urban, industrialized areas etc., the cost of these devices and the cost involved in educating people to use and look after them, etc.

Lastly, we have to train and educate our religious leaders or temple authorities, as these have great influence over the masses. Their convictions or misunderstanding about leprosy will have a great influence in the leprosy eradication program. The attitudes a leprosy patient has about their life and their disease are very important in getting cooperation in their treatment program. Just as the patient's attitude is important, equally important is their family's and society's attitudes be changed for the positive if necessary.

Our religious books should be correctly interpreted and abvocated so that society as such can live and progress peacefully.


Sectoral Session B-1 Monday, September 5 16:00 - 17:30

LEGISLATION

Chairperson: Ydh. Dato E.J.Lawrence Executive Secretary General, Malaysian Leprosy Relief Association (Malaysia)
Co-chairperson: Prof. Hisao Sato Associate Professor, Japan College of Social Work (Japan)

LEGISLATION

E.J.LAWRENCE
Malaysian Leprosy Relief Association, Malaysia


We have a very interesting topic before us but before we begin may I just make some introductory remarks.

The 1st International Conference on Legislation concerning the Disabled was held in Rome 1971 concluded saying constructive legislation should be designed to foster understanding of the principles of rehabilitation (in the broad meaning of term which include what we now call "equalization of opportunity") by all members of society especially those directly involved. It is the obligation of governments to consult organization for disabled people and organization of services providers in preparing, administration and implementing legislation.

The 2nd International Conference on Legislation concerning the Disabled was held in Manila 1978. It affirmed the findings of the First Conference and went on to recommend that legislation should establish a National Co-ordinating Council in each country made up of representatives of government departments concerned, of voluntary agencies and of organization of persons with disabilities. It specified the following as being among the functions of such a body: (a) to identify needs (b) produce comprehensive plans (c) advise the Government on all aspects (d) to evaluate the effectiveness of services. The Conference recommended "The recognition of integration of disabled as self reliant and self-actualization persons in the Community as the ultimate goal of services for rehabilitation and welfare of the disabled."

In 1980 at Winnipeg, when the Charter of the 80's was adopted, it reaffirmed the main points made in Rome and Manila and asserted it to be a right of primary importance for people with disabilities to participate in those decision which concern their own lives, and that the influence of people with disabilities should be guaranteed at all levels of society. It further states "specific educational and informational efforts concerning the fulfilment of their rights in society and the services available to them should be directed at and developed for people with disabilities and their families."

The World Programme of Action states that the principle of equal rights for the disabled and non-disabled implies that the needs of each and every individual are of equal importance and that these needs must be made the basis for planning of societies.

The international expert meeting of Legislation for Equalization of Opportunities for People with Disabilities in June, 1986 in Vienna endorsed all the above. Also among the conclusions, it was suggested that legislation should have as its primary aim the fullest possible social and economic integration of people with disabilities into family, community and society. That legislative provisions should emphasise strengthening families of disabled family members to the same extens as legislative provisions for non-disabled members of society. Governmental agencies at all levels, local, regional, national and international should recognise the primary role of organizations of persons with disabilities in advocacy on disability issues, especially with reference to legislation. Governments should not only proclaim legislation but should allocate adequate economic and human resources to permit implementation of the legislation. To facilitate smooth implementation, the position of Ombudsman should be created to intercede for implementation of rights and improve services. Thomas Woodrow Wilson once said that "law is the crystallization of the habit and thought of society". We have a number of eminent speakers to speak on today's topic which is "legislation - an international perspective".

Therefore without more ado may I call on Ms. Genevieve Pinet - Regional Officer for health and Legislation, Regional Office for Europe WHO.


LEGISLATION - AN AFRICAN SITUATION

E.S.F.MAGAGULA
Vice President for Africa Region, Rehabilitation International Mbabane, Swaziland


This paper proposes to give you an overview about the processes and levels of legislations for people with disabilities in Africa.
Although I am not an authority on this subject in Africa, I do have some knowledge of what has been achieved so far in many African countries. This is because of my personal interest in the affairs of people with disabilities and my four years experience as Rehabilitation's Vice President for the Africa Region.
Dr Otto Geiecker - President - Rehabilitation International states that "A Society that is aiming to achieve an equalization of opportunities for all its members, has therefore to demand the legislations to get up measures that will also enable its minority to fully use its rights and to fulfill its duties".
This is the point which has not been fully appreciated by legislation and indeed the people with disabilities themselves in Africa.
Indeed legislations that deal with the rights and needs of people with disabilities will, on the main, concern areas such as social security, education, training, social welfare and their cultural values. And these areas have hitherto been understood from the humanitarian point of view, but not well defined to mean the fundamental rights of an individual and an obligation on the part of society to provide and deliver these opportunities and services. Africa is not and can not be different from any other region of the world in her efforts to improve and protect the human rights of her people with disabilities.
One of the tools available to Africa, is legislation. However these legislations in different countries in Africa, vary both in their character and effectiveness.
Africa, a continent of developing nations with legal systems which reflect the particular socio-economic needs and circumstances of each nation. Legislations are, on the main, developed to cover the general rehabilitation policies and co-ordinated closely with general policies of social and economical development of these individual nations.
Unlike developed nations, Africa has not been able to further define the reasons and types of legislations as being the rights, services and benefits of persons with disabilities. Therefore we still need to further define these laws to include:-

(1) The general legislation fcr the general population which subsumes such provisions for disabled persons.
(2) Specific legislation which applies to all categories of people with disabilities.
(3) Specific legislation with provisions for specific groupings within the overall population of people with disabilities.

The social workers in the field of Rehabilitation both in government and Non-government organizations have always found it difficult to have legislations pushed through the legal systems for a variety of reasons, some political, social and economical and others being lack of expertise. Therefore in most cases policies are established outside or without specific legislations only to facilitate delivery of service.
For a long time in Africa, there were more people who advocated for this practice - no legislation, especially those working with the Non-government organizations, as it was felt that the practice gave more room and flexibility and less restrictions by the law. But of course the law of nature demands that the rights of disabled people, like all others, be properly defined for their benefits and for the knowledge of the community within which they find themselves.
The other point why Africa is so far behind in the promotion of legislations for people with disabilities, is because for a long time her nations have been relatively small, and almost all nations had very strong extended family customs. Now with such high rate of population growth - 3%, and the advance in education, coupled with high rate of migration into cities and industrial areas, the extended family practices are fast breaking down, and the individual rights have been threatened.
Having said all the above, and recalling my earlier comments that generally these laws are built into general policies of each country based on the socio-economic demands at the given time.
I should not lose sight of the different types of legislations which different countries have had running for many years, especially through the Industrial Relations laws. To a large extent and in relation to the workplace, these legislations do provide for:-

1. Prevention -
-
of accidents at workplace.
of diseases among workers.
2. Rehabilitation - training of victims of accidents to acquire new skills and be employable again.
3. Compensation -
-
for loss of active life.
to purchase mobility devices ect.
4. Childrens Act -
-
when they may be empioyed as labour.
the abuse which may result in disablement.
5. Mental Health -
-
mentally ill persons may not be employed.
may be hospitalised as patients etc.

But of course these laws have nothing to do with disability that occurred outside the work area. There are now some countries which are developing specific legislations for specific groups, one by one at a time.
There is now an awareness in Africa, to both the governments and the people with disabilities. This awareness has come about through education and through continued publicity and advocacy by international bodies such as Rehabilitation International. International Labour Organization, UNICEF, and others, well respected by national governments. Of course the International Year of Disabled persons 1981 followed by the Declaration of the Decade by the United Nations and the International Meetings on Legislation that have been held in Rome Manilla and Vienna have all confirmed the seriousness of the matter.
It is through international information that people with disabilities have become aware of their rights and how they may be advocates for their own rights. The workers in the field of Prevention and Rehabilitation have been given tools with which to convince national governments about the needs to develop legislations that will afford people-with-disabilities an opportunity to fully utilise their rights in society and even contribute to the general economy of the country.
We conclude therefore that the results of the International Experts Meetings on Legislations and Equalization of Opportunities have been very effective and helpful in Africa and will continue to provide a guide to those institutions interested in the development of legislation.


STATUS QUO AND PROBLEMS OF THE MAJOR REHABILITATION SYSTEMS IN JAPAN

KAZUOKI SHIRABE
Tokyo Colony,Tokyo,Japan


1. Basic Law and Difinition of People with Disabilities
The article 25 of the Constitution of Japan declares that every people has the right to maintain the minimum standards of wholesome and cultural living. Reflecting the idea of this article, there is a law titled Basic Law for People with Physical Disabilities and Mental Disabilitites as the constitution of welfare for people with disabilities. But this law is not effective, because this law is not authorized the appropriations.
Law for the Welfare of People with Physical Disabilities and Law for People with Mental Retardation are the most basic regulations for the welfare services of people with disabilities. In addition to them, there is Mental Health Act for people with mental illness. It is one of the characteristics for the laws in Japan to be separated according to the categories of disabilities. Owing to that responsible bodies in administration are also sectionalized by the kinds of disabilities and it could be the obstacles against efficient delivery of the public services.
Another characteristic is the restricted difinition of people with disabilities in comparison with European countries and US. So, people with epilepsy, rhumatism, autism, and rare or chronic diseases have difficulties to benefit from public support such as welfare services. Therefore, we are now considering the possibility for changing categorized system to comprehensive one.

2. Major Improvement on Rehabilitation Systems and Policies after International Year of Disabled Persons in 1981
1 Drastic Change of Pension Schemes
One of the most important policies is income maintenance. Since an amendment of the pension system in April 1988 - itself brought about largely by the effort of disability movements - the basic disability pension covering those already disabled before twenty years old is now between 52,000 yen (400 US dollars) -65,000 yen (500 US dollars) per month. But there are still many problems to be solved, such as inadequancy of benefit level, method of income limitation, as well as the existence of unpensionable disabled people.
2 Enactment of Mental Health Act
Another recent important change is the enactment of Mental Health Act.In the past the policy for people with mental illness had been considered a part of the medical policy and welfare services such as social rehabilitation and life assistance were far behind.But, through the amendment of Mental Hygiene Act twenty years after its enactment, Mental Health Act aiming at the social rehabilitation of people with mental illness was anacted and in effect in July 1988.
Although the law was anacted, the implementation is just on the threshold. And there still remains strong discrimination and prejudice to people with mental illness among medical staff, administrative servants and citizens, and it is one of the serious social preoblems.
3 Amendment on Law for Employment of the Disabled
The amendment on Law for Employment of the Disabled in April 1988 was another important change. The quota system in Japan requires companies as well as public sectors to employ 1.6% to 2.0% at least of their employee from disabled population. The companies which does not obey this law have to pay 40,000 yen (300 US dollars) a month for the shortage of one disabled person to be employed. Although it had been applied only to people with physical disabilities, the law became to be applied to people with mental retardation and mental illness through the amendment this time. In fact employment rate of the disabled has not yet achieved and the total nunber of employed people with disabilities has been decreasing. The larger companies' scale becomes, the worse employment rate of the disabled shows.
4 Public Support to Small Workshops
One of the problems concerning the working of people with disabilities is public support to small workshops. It is said there are about 2,000 community-based small workshops throughout Japan and about 30,000 people are working there.
Parents, teachers and volunteers of people with severe disabilities, mainly mental retardation and mental illness, who are not acceptable at the ordinary vocational rehabilitation agent. But, it is very difficult for those small workshops to get public support, because those workshops are not based on any law. Compared to 950 authorized sheltered workshops in Japan, the people concerned say those small workshops without public support symbolizes the poor policy for people with disabilities in Japan.
5 Problems in Education
Education plays an invaluable role to facilitate the participation of people with disabilities to the society. Since 1979 compulsory education has been applied to all disabled children by law in Japan. So, every child has the right to receive education. But, the approach for integration of children with disabilities into ordinary classes are inadequate. The conflicts between Education Committee and parents and their disabled children who want to go to ordinary schools arise throughout Japan.
Because of the compulsory education of all dosabled children, the disabilities of pupils at special schools became severe, which caused another problem - where do they go after graduation. And no guarantee for higher education is an obstacle against their participation to the society.
6 Far from Barrier-free Environment
Services for housing is one of the most underdevelopped areas. Although housing problems are not unique only to disabled people, a matter of housing in the institutions are needed to be solved as soon as possible. Housing projects such as Housing with Care started only recently and it is not yet official system at the national level.
The accessibility to the buildings and the public transportation are also very behind, which you probably experienced around Shinjuku. There is no law which guarantees accessibility for people with disabilities in Japan.
7 Training Proffesionals, Urgent Need
In Japan the level of medical services is rather high and people with disabilities can receive some support if his/her total income is under certain level. But rehabilitation is not a compulsory subject for the student at medical department of universities, and there is the shortage of medical rehabilitation staff. The training of paramedical staff such as PT and OT is another problem, too.
It was the last year that Law for Social Worker was anacted, but still even no qualifying system for ST. There is no place to teach vocational rehabilitation comprehensively.
8 People's Perception and Participation of People with Disabilities
The importance of the involvement of people with disabilities and their role has been emphasized since International Year of Disabled Persons in 1981. But disabled people's powerful leadership has not yet realized in the process to solve the problems, because higher education and employment opportunity are not secured completely, and the attitude of society and families to the disabled tend to be overprotective. It is true that the number of disabled people who go outside freely and living independently in the community are increasing, and the participation of the disabled in the policy making has been even only a little concidered. But still it is not enough.


BRASIL'S NEW CONSTITUTION AND THE RIGHTS OF THE DISABLED PERSONS

H.BAPTISTA
Associacao Brasileira Beneficiente de Reabilitacao (ABBR), Rio de Janeiro/RJ, Brasil


Brasil occupies half of South America's Central-Eastern region with its 8.5 million square kilometers and 145 million inhabitants. It is the largest nation in Latin America and the fifth largest in the world, after the Soviet Union, the United States of America, Canada and China.
Most of its population is concentrated on the coastal regions, specially in the Southeast area where the two largest Brasilian cities are located - Rio de Janeiro with close to seven million inhabitants in its metropolitan area, and Sao Paulo with approximately eleven million.
On the other hand, most of the interior of such states of Para, Amazonas, Goias and Mato Grosso, have a population density of one inhabitant per square kilometer, or less. All this represents the unfortunate overpopulation of the large cities with its problems of very poor living conditions (slums) and public health.
As a nation of great contrasts and with an immeasurable potential of natural resources, Brasil currently ranks among the ten largest economic markets (in terms of Gross National Production). Nevertheless, the economic crisis has hit this country very strongly. The world's attention has lately been pointed towards Brasil, for ours is the world's second largest foreign debt. The country's resources are limited for all national profits (and there included the excellent superavits obtained in the last months with exports), are used for paying our huge foreign debt, which increases continuously like a snow ball, on account of the international banking interests. The remainder is insufficient to supply our needs for development. This situation causes a deterioration on the population's living conditions.
These are important factors to analyze the nation's current situation with respect to rehabilitation. In a region with so many basic needs and with most of its population living close to poverty, rehabilitation as a priority, has been surpassed by the need for adequate housing, health, nutrition and education, for illiteracy also represents a compounding problem.
It can be observed that notwithstanding the economic crisis, the government has been investing in rehabilitation; however, there is a lack of coordination and planning, many times with a twofold attendance of service in some areas, in detriment of others.
Non-governmental private entities fight for survival, each one separately, although several attempts have been made to group them for a conjoint and coordinated job, but have failed.
On November 1986 the new Congress was elected with the incumbency of elaborating a new Constitution, and this is the real opportunity to define and determine concrete measures.
This new Constitution has not, up to date, been promulgated, but on the chapters already approved, it is assured the assistance to the disabled persons. It determines the obligatory setting of programs for immunization; prevention of accidents; rehabilitation facilities accessible to everyone; special education; vocational training and rehabilitation; the right of work for the disabled; private or governmental job and salary discriminations are forbbiden; the guaranty of a monthly minimum salary to the disabled one who is unable to provide for own maintenance is also established.
It has been determined that conditions be offered to facilitate the access to buildings and public places as well as with respect to transportation of the disabled persons.
The pioneers on rehabilitation in Brasil are making every effort to overcome very many of its difficulties - the aims have been established and the goals are being gradually reached.
We sincerely hope that with the new Constitution we may gather more elements and more strength to obtain the integration of the disabled persons in Brasil.


LEGISLATION TO ENSURE THE RIGHTS OF PEOPLE WITH DISABILITIES

ESTELITA G. JUCO
House of Representatives, Philippines


It is a happy occasion that brings us together to this 16th World Congress of Rehabilitation International. Coming as we do from different countries and various groupings and organizations, we nevertheless share a common concern: the protection and advancement of the disabled so that they may be able to live fully and meaningfully within the limitations of their impairment.

As we move toward the close of the Decade of the Disabled, there are a number of achievements that give us cause for rejoicing. A heightened awareness of the plight of the disabled has evolved in many countries and is gradually spreading throughout the Global Village. As a result of this widening reach and keener understanding, we are heartened by the immediate response of society in general to the needs and aspirations of those whom birth, disease, war, accident or fate have saddled with physical impairments.

This rising level of awareness among the different sectors of society is due in no small measure to the organized and well-coordinated efforts of Rehabilitation International as well as of many other organizations equally imbued with this humanitarian mission: to strengthen the resolve of the disabled to hurdle the roadblocks that stand in the way of the striving towards normal living, and to call the attention of governments and private agencies to the situation of this heretofore neglected part of the world population.

Many other societal components have contributed to the improvement of the quality of life and the expanded options for the future experienced by the disabled today. Sharing in the heroes' role are those in the medical profession and in allied disciplines which have to do with ensuring comprehensive health care programs, practitioners in Special Education working with the young as these children strive to get over the impediments to normal learning, community service agencies and volunteer groups reaching to give assistance to the
disabled, businessmen who go out of their way to make it possible for the physically impaired to earn an honest living as a contributing member of the company's workforce, and media with the significant support given for the dissemination of information/education regarding disability concerns. All these factors have contributed their fair share in bringing about a better understanding, and consequently a more ready acceptance, of the disabled by the general community.

Nevertheless, it must be underscored that the protection and enhancement of the rights of people with disabilities depend most particularly on one vital keystone: LEGISLATION. It is not merely the lead strategy to secure equalization of opportunity for the implementation of the World Programme of Action Concerning Disabled Persons as adopted by the United Nations Assembly at its 37th regular session on 3 December 1982 by its resolution 37/52.

Legislation sets in place and protects with the force of law such measures as may be drawn up to pronounce, protect and promote the rights of the disabled. Long after the Decade of the Disabled will have passed to give way to other decades and other community concerns, long after the media blitz to inform and educate the people about the reality of disability and how it may be merely an industrial accident away, long after the membership drives and fund drives to assist the disabled will have become no more than gala social events in a dim remembered past, legislation will remain to ensure the protection and well-being of those whose lives have been blighted by impairment of their faculties. The majesty of the law will continue to spread a protective mantle to guarantee the rights of people with disabilities.

In developing legislative measures for the protection and the advancement of the rights of the disabled, it is necessary that this special sector be consulted and actively involved. It is unfortunate that, under the guise of "development", many so-called development experts impose their own perceptions and strategies on people who have never been given the opportunity to view their own situation, analyze its causes, verbalize their needs and priorities, and work out strategies to meet these difficulties within the context of their own culture and the limitations of their resources or their capacity to respond to other technologies.

Bishop Ted Bacani stated before a large assembly of community leaders:

"Development means the actualization of the potentials of the human person. How are the potentials of the human person actualized?

They are not actualized unless the person himself acts. While a person is only the object of the action of others, he does not develop. A human being develops only insofar as there is an action from within.

Development requires as the barest minimum the action of a human being (an actus hominis) which may not be conscious but proceeds from the powers of man.

For full human development, more than an actus hominis is required. One needs an actus humanus, a human act, i.e. an act consciously and willingly done, a conscious and voluntary act.

Until this stage is reached, man does not develop as a human being. He may develop as a biological entity but he does not develop precisely as an embodied spirit until he consents to his own development.

In this sense all development must be self-development.

It is not so much when a man is acted upon as when he acts that a person actualizes his potentials.

Those therefore who are interested to help others develop must lead and inspire those others to act for their own development.

While people are only objects of action for development, they do not develop. It is only when they become the responsible protagonists of their own development that real development takes place."

Development is, therefore, not development unless it involves the people themselves. We cannot impose development on others. They must choose to participate in the process.

The presentation of laws to protect and promote the cause of the disabled derives its moral force from the fact that these articulate the mind and the desire of the sector itself. The disabled know only too well the difficulties that hamper them from integrating with the community. They are aware of the most effective strategies that can help them to override these road-blocks as they surge forward to rise above the limitations of physical impairment and prove themselves as active and productive members of the community and its pool of human resources.

Because of their own store of experiences and instances of frustrations, the disabled can identify the measures that should be given priority attention by the lawmaking branch of government: education, skills-training, mobility, accessibility and equalization of opportunities for livelihood.

These are grave concerns that challenge age-old resistance to progress and change. So many countries still hold the ancient concept that disability is a visitation of the wrath of God on the children of those who have been morally remiss. Hence, disabled children are hidden out of sight, like social outcasts, a source of parental shame.

With heightened information-education, our communities are awaking to the needs of the young with disability to obtain education because this will give them the chance to get on in life. Laws to aid Special Education (SPED) must therefore be enacted, guaranteeing better study conditions for the students, and granting more incentives to SPED teachers so that they will be motivated to do their part in developing the latent skills of disabled children.

Skills-training is another area that demands legislative attention. Provision must be made for government to support centers that focus on developing adaptive skills despite disabilities so that the workforce undergoing training may be able to participate in the general work program and contribute to the profit of the company.

Mobility is a very important factor so that those with impairment may be able to live as normal a life a possible. So much will still have to be accomplished to make it easier for the disabled to go places, particularly in pursuit of an education or in going to and from his place of work. The transport industry sector will still have to be prodded into a more compassionate awareness of the plight of passengers they oftentimes spurn or refuse to serve.

Hand in hand with mobility is the need for greater accessibility to public places, whether these are owned by government or the private sector. While it is true that the Accessibility Law has been a boon of several years' standing, still it will have to be admitted that, as a rule, there remain many places where the law is honored more in the breach than in the keeping. It therefore becomes imperative that amendments to the law be passed, to zero in on the persons responsible for the lapses in the operationalization of the law, to spell out fixed sanctions in terms of fines and imprisonment, and to motivate the private sector to make their buildings for public use more accessible through tax incentives and other provisions.

Equalization of opportunities for livelihood ranks very high as a concern of the disabled and demands immediate legislative action. Despite the significant inroads made by the different sectors rallying to assist the disabled, there is still an "instinctive prejudice" among people in the corporate world and the manufacturing and service industries that regards the disabled as incapable of putting in an honest man's share of work to build up company profits. Therefore, disability is oftentimes regarded as an automatic deterrent to profitable work output. The disabled applicant for a job is instantly denied a chance to prove his worth.

Laws providing for livelihood opportunities for the disabled must therefore be given special time and effort in the legislative agenda. On the one hand, the sector must prove their capability to handle jobs responsible and effectively; while on the other hand, there must be research done to showcase certain businesses and industries who undertood to hire the disabled and found them to be assets to the organization. In this way, instead of resorting simply to the clout of the law to generate jobs for the impaired, case studies of companies as role models in terms of hiring policies are projected to underscore the fact that the disabled can - and do - contribute to the ring of the cash register.

In order to achieve this favorable climate of acceptance in business and industry, it is necessary to focus on the "handicapables" -- disabled persons who have turned in impressive performance records in their particular fields of endeavor, earning the respect not only of their peers but also of their superiors as well, thereby setting a landmark for others to try to equal or surpass. And there are "handicapables" galore in the community if only we take the time and the effort to seek them out. Media can play a vital role in bringing these achievers to the fore-front of public awareness and community acceptance. Through this strategy, legislation seeking to provide employment opportunities for the disabled who qualify can be very significantly assisted.

In legislating for the rights and the concerns of the disabled, there is a strong need for the comprehensive network support of the entire community, beginning with the disabled themselves. This support system must bring together the various sectors of society: government organizations (GO's) and non-government organizations (NGO's), education and labor, health and paramedical agencies, the church and the cause-oriented groups, the captains of business and industry as well as media -- all must lock arms in a show of humanitarian solidarity and do their part in addressing the multifarious needs of the disabled, thereby hastening their time for mainstreaming.

In the thrust of the legislative agenda to safeguard their rights, the disabled should take an active role in advocacy strategies, articulating their expectations from the convincing standpoint of their personal experiences. In fact, the personal testimony of the disabled replicated in various media centers can convince more readily than letters to the editor or protest manifestos from unidentified or indifferent support groups.

Likewise, to increase the impact and to underscore the urgency of legislative measures, there must be extra-legislative action/programs undertaken. These will illustrate what an openhearted community can accomplish to advance the cause of the disabled, especially if government itself provides that "leadership by example".

But can all these be achieved? We ask ourselves. Outside the crisscross networking of the bureaucracy, is it possible to get the disabled to organize themselves? Can education be encouraged to make it easier for Special Education teachers to carry on their noble mission? Can government assist in providing skills-training centers and other aids to help the disabled to move from a state of abject dependency to a more independent and self-supported lifestyle? Can the various sectors of society be galvanized into a major advocacy effort, with the support of media?

Can all these factors assist in legislating for the rights of people with disability?

It is not easy and it does not look seemly to come out with a categorical YES. I can only offer the hope that all these can be achieved, and that with the support and encouragement of an awakened community, things will look up as far as the disabled are concerned.

As Constitutionally-mandated representative chosen by President Cory Aquino to look after the concerns of Women and the Disabled in the House of Representatives, I have especially concerned myself with providing legislative relief to the many problems cramping their life. But this has been made very much easier because of the cooperation, assistance and encouragement given to me by the Department of Social Welfare and Development, and its attached agency specifically set up to monitor and coodinate community efforts to help the disabled: The National Council for the Welfare of Disabled Persons. Our offices have worked together in harmony and supportiveness, looking for ways to protect and advance the rights of the disabled. We have worked independently and cohesively, building up a data-bank on disability issues, on statistics relevant to our work, on developments in various regions.

The disabled have been encouraged to organize and to identify their needs, their programs, their expectations. My office has kept in constant and continuing communication with them, and thereby been able to identify their leadership, the "handicapables". We have tried to network these valuable human resources, putting them in touch with other significant leaders in the hope that they may profit from shared experiences and strategies. Frequent consultations with these groups have resulted in various legislative measures that have been submitted to the House, and that are being campaigned for by the public, especially the disabled, in media and other public gatherings today.

In a number of regions, the disabled themselves have worked out their agenda to achieve their goals, consulting with government to ensure access to public buildings, meeting with business leaders to identify jobs that could be undertaken by the disabled, meeting with education and manpower training heads to focus on the gradual absorption of the impaired in the community workforce.

My friends, legislative work for the disabled is not an isolated and independent effort carried on by people charged with parliamentary duties. It calls for the collective goodwill and the concerted effort of an entire community. It is strengthened by continuing communication and supportiveness not only of the local community or the country but of the various components of the global community. The advancement of the rights of the disabled in one country serves as a challenge and an inspiration for others to blend their efforts likewise and try to achieve that goal in their own homeland.

Let us continue to work in togetherness. Let us encourage one another's goodness. Individually, we have mountains to climb and lonely hillsides to hurdle. Together, we shall find courage to do the work that must be done, and remain streadfast in our work to legislate and put in place the rights of the disabled, a monument that can serve as a beacon of hope for all time.

Thank you.


Title:
16th World Congress of Rehabilitation International No.5 P.182-P.230

Publisher:

Month,Year of Publication:

To access/retrieve this document:
Japanese Society for Rehabilitation of Persons with Disabilities
1-22-1, Toyama, Shinjuku-ku, Tokyo 162-0052, Japan
Phone:03-5273-0601 Fax:03-5273-1523