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Sectoral Session E-1 Thursday, September 8 14:00 - 15:30

EQUALIZATION OF OPPORTUNITIES THROUGH BARRIER-FREE DESIGN IN ARCHITECTURE AND TRANSPORT

Chairperson: Mr.John W.Stott President, National Disabled Persons Assembly Inc. (New Zealand)
Co-chairperson: Prof.Kan Nomura College of Science & Technology, Nihon University (Japan)

CREATING A NON-HANDICAPPED PHYSICAL ENVIRONMENT

M.DANES
Union of Invalids, Federal Committee, Prague, C.S.S.R.


The elimination of architectural barriers is a part of an important field of attention paid to disabled citizens. The existence of barriers excludes the disabled citizen from participation in social activities or limits their self-assertion in work, precludes them often from visits to medical, cultural and sporting installations, shops, services and recreational centres. Barriers contribute to isolate disabled persons from the general public.

Architectural barriers, however, do not concern only disabled, but also old persons, people undergoing temporary rehabilitation and treatment of impaired limbs as well as pregnant women and mothers with small children. In Czechoslovakia, these groups represent 20 per cent of the total population.

At Prague in October 1987, there was an international conference on the ways in which disabled people's accessibility could be built into the environmental reconstruction of town centres - particularly those protected because of their historical value. This was organized by the CIB (International Council for Building Research Studies & Documentation), and the Union of Disabled of Czechoslovakia.

Town centres have always been centres of activities of different groups of people. Constantly changing economic needs require physical adaptation to new functions. These changes are an opportunity to increase the accessibility of this environment for all citizens.

Inner towns represent a system of functions like housing, administration, business, recreation and transportation incl. the network of streets, parking facilities, zones reserved to pedestrians and apublic transport.

In view of different demands put on inner towns, it is of extraordinary importance to great accessibility by a general plan based upon legal measures. This requires a highly professional approach, participation of users as well as a high level of awarness of the general public. On the basis of these considerations, the participants of the seminar of experts of CIB - (International Council for building research studies and documentation) drafted several resolutions.

Resolution addressed to national and local governments

  1. To create legislative background for securing accessibility to newly built areas as well to areas under renovation, modernization and extension of the existing town environments.
  2. To create practical means by which control and legal participation of organizations of disabled in pushing through and controlling the implementation of legislative measures.
  3. To ensure resources for development, modifications and control of realization of legislative regulations.
  4. To ensure means for user's organizations of in order to permit them to carry out expert and control activities in the process of planning and construction.

In our opinion, this resolution correspnds to the U.N. World Action Program approved by all member States of United Nations.

Resolution addressed to architects, planners, contractors and educational institutions

  1. Architects, planners and contractors should consider accessibility as a basical requirement for planning and projecting and not as a limitation.
  2. Such an attitude to these problems should become an inseparable part of education and training of specialists.
  3. In their specialized activities planners, architects and contractors must cooperate with organizations of disabled citizens.

Resolution of services which create an accessible environment

The equalization of opportunities as defined and requested by the U.N. World Action Program requires an introduction of services which make the environment accessible for many old and disabled citizens. Compared to life in institutions, the life of disabled persons integrated into the society of nondisabled people has a considerably higher value. Therefore it is recomended, in place of expenditures for building and running the institutions, to support services enabling old and disabled persons to participate fully, and on the basis of equality, in the life of society. These services must include financial assistance, basic medical and rehabilitation services, consulting and personal assistance in activities connected with daily life, work and leisure.

In defining their own needs, disabled citizens underline the new philosophy of granting services based upon their own choice, independence and personal freedom. This new philosophy requires that disabled persons are respected as citizens with equal rights like any others and only secondly considered as receivers of services granted by society.

Having in mind the differences between countries as far as cultural conditions and available resources are concerned, the participants of the seminar approve the following statement as long-term aims in the sphere of services of personal assistance.

  1. Governments, preferably at a national level, should take over the responsibility for organization and financing of services of personal assistance.
  2. Services should be organized in a way giving the users identical possibilities in the choice of housing as the nondisabled population. The essential requirement of an independent and autonomous life is that the organization and everyday administration of personal assistance services are carried out by the users themselves on an individual basis. The participants of the seminar are of the opinion that maximum possibility of exercising influence on persons assisting heavily disabled exists when the heavily disabled are in the position of employers in relation to these persons. In cases when certain users haven't mental preruquisits to arrange themselves matters of personal assistance, legal representatives of other professional organizations should be available for this purpose.

Legal prerequisits helping to abolish architectural barriers are of a great importance. In Czechoslovakia, there exists since 1985 a Public Notice of the State Committee for Scientific, Technical & Investment Development concerning the general technical requirements ensuring the use of buildings by persons with limited mobility capacity.

This notice applies to planning and construction of new buildings and, to a certain extent, to reconstructions of public buildings and installations. On the basis of corresponding law, disabled persons are granted a state subsidy for abolishment of barriers in their appartments up to 80.000 Czechoslovak crowns. Similar contributions are granted also for example in Sweden. Available financial means for abolishment of architecture barriers are thus a factor of tremendous importance.

Finally, one of the main presuppositions: it is necessity to change substantially faster the consciousness of the society towards disabled persons so that the society understands better the living interests and needs of disabled. The World Congress of Rehabilitation International is for all of us who work in this sphere a great support.


THE ENVIRONMENTAL AND CONSCIOUS BARRIERS SURROUNDING PERSONS WITH DISABILITIES IN JAPAN

SHUZO IMAOKA
National Council for Establishment of Independent Living for the Handicapped, Tokyo, Japan


I would like to express my gratitude to Rehabilitation International of this Congress for giving me an opportunity to state my opinion on behalf of Japanese disabled persons at the Sectoral Session on Barrier-Free Equalization of Opportunities through Design in Architecture and Transport at this World Congress of RI.

I was born in 1950 and suffered from Polio at the age of one and a half. In the year that I was born, the Welfare Law for the Physically Disabled was enacted and support services for employment and vocational independence of many demobilized wounded soldiers was started. However, the welfare services for the physically disabled in Japan were started without considering much about policy measures for the severely disabled persons such as persons with cerebal palsy or muscular dystrophy.

It was in 1973, when I was twenty two years old, that I first began to cross streets and move about by myself. At that time, they finally started to produce home manufactured electric wheelchairs in Japan, and to tell the truth, until then, I had never moved even thirty centimeters by myself. Therefore, I went to a local elementary school carried on my grandmothers' back.

At that time, regular schools, like today, had stairs, toilets that were only Japanese style, and there wasn't any equipment or special consideration for the disabled. At the same time, the system of special education with special schools did not exist, so I was fortunately able to receive regular education. As I think back now, I could have had a more active and pleasent school life if I had had the electric wheelchair that I began to use fifteen years later, at the age of twenty two, or if environmental reforms had been begun in schools.

After that, they began to build special schools everywhere in Japan. Various policy measures were initiated that moved away from integration, such as an obligatory system for disabled children to attend special schools. Primarily, the Welfare Law for the Physicallly Disabled in Japan encouraged disabled persons to make an effort to overcome their disabilities and to get jobs by themselves, but the Law itself did not reform the social systems nor social environments at all.

In 1964, the International Games for the Physically Disabled were held in Japan, and Japanese severely disabled persons were amazed to see Western disabled people in wheelchairs playing sports. This led to the improvement of manufacturing techniques of Japanese wheelchairs. Along with the trend of motorization, disabled persons began to operate their own cars, thereby increasing their ability to participate in society.

With a background of these people's advancement in society in the early 1970's, environmental reforms began to be incorporated in social welfare measures. This meant that the national government appointed model cities for physically disabled persons, and the local governments intiated environmental reform standards and started reformations of public buildings and roads in compliance with these standards.

However, in many cases, severely disabled people, such as individuals with cerebral palsy, muscular dystrophy or severe polio, could not live independently in a community with these minimal environmental reforms. As a result, they were obliged to stay at home with their families to become old. When living with their family became too difficult, they had no choice but to live in large institutions away from their home community.

In the 1970's, a movement of a group of people with cerebral palsy began to work for strong reforms. The main points of their movement were; objections to huge residential institutions, protests against the public transportation systems such as buses and railroads which do not allow disabled passengers and a call for the revision of the Eugenic Maternal Protection Law which was aimed at preventing the birth of disabled persons. They also objected to policies which required disabled children to attend special schools, which produces another kind of discrimination.

At the same time, there were groups of persons, disabled from childhood, who made political demands regarding the above issues. They advocated reforms that allowed the disabled to become socially independent within a community even though vocational independence was difficult. I have participated in this movement.

The three points of the movement were; (1) a pension scheme and establishment of income security (2) entitlement of suitable housing (3) the right to have the opportunity to be mobile. Especially (2) and (3) were subjects of environmental reforms. These were to establish conditions where severely disabled persons could live independently in public housing to construct and promote living institutions where the disabled themselves were responsible for their lives, to develop and diseminate electric wheelchairs as well as to plan public transportation.

As I began to use an electric wheelchair myself, the above demands became my own issues. For example, we need housing conditions that allow us to move freely with electric wheelchairs. We believe it will be possible for us to live more independently by using machines and self help devices. This expands our ability to move about more freely, such as smoothly transfering trains. These issues became my constant themes.

I would like to relate my own experience of the issues about the independent living movement of the Japanese disabled. More people say that systematized attendant care helps the disabled to live independently. I do not deny the benefits of attendant care, but I believe that improved conditions which allow the disabled to function without using much of anothers' help is essential. I think it is difficult for the disabled themselves to promote their movement on barrier-free environments without securing his ability to move to the maximum degree.

In Japan, consideration toward the disabled often results in "special treatment" or exclusive systems for the disabled. This interupts normal patterns of behavior. For example, when the disabled person uses the bullet train, they are required to use certain trains or have their names and addresses checked. In the case of accessible elevators, there are always signs saying "Please use this elevator with an attendant." These are examples that show that the systems are not created with the assumption that the disabled can move about by oneself in Japan. So here I would like to establish fundamental rules for environmental reforms.

(1) To create physical conditions which maximally allow the disabled to move about without anothers' assistance. (2) In order to put the above mentioned into effect, we must create systems that we can use along with the general public by utilizing universal techniques and systems. (3) To conduct research with maximum effects and minimum costs. (4) In addition to environmental reforms, that we ensure the physical needs of the disabled person himself such as, wheelchairs suitable for use on trains and easily collapsible wheelchairs that can be taken in taxis. (5) So that the disabled person can actively take a role in the coordination of his environment, the disabled person must take responsibility for his own saftey as all people do. We have to do things based on the assumption that we have such abilities, although in some cases it is impossible and in other cases the social immaturity of some disabled people creates the desire in them to feel the need to be protected and taken care of.

After ensuring the above matters, I would finally like to speak about tasks of policy measures on environmental problems that the physically disabled are facing today.

For the physically disabled with cerebral palsy or those using an electric wheelchair, the physical availability of establishments, residential conditions and transportation systems, are essential tasks. To implement these tasks, we need to do several things. What I particularly want to tell you here, is that I have had the opportunity to test ride Swedish and British wheelchairs and they have excellent functions compared to the electric wheelchairs in Japan.

Japanese electric wheelchairs are all standardized according to JAS standards, while in Sweden and England each disabled person can choose a wheelchair that is suitable to his or her own disability. It is necessary to promote an import system or a reduction of custom duties so that the Japanese disabled can have access to these electric wheelchairs and other self help devices. This will give the Japanese electric wheelchair manufacturers incentive to promote greater technical development.

It is also necessary to amend the Building Standards Act, which is a fundamental act concerning building codes and regulations in Japan, to consider the needs of the disabled. Public policies regarding housing are still inadequate in Japan. I think more public housing should be constructed which integrates materials and systems allowing the disabled person to function more independently.

For those disabled persons requiring institutional care rather than regular housing, the current conditions of such institutions are quite poor in Japan. These conditions should be improved and at the same time a system should be developed whereby the disabled person shares in the necessary costs depending on the facilities and services of the institution.

Today, in the Shinjuku area of Tokyo, disabled people are demonstrating for systematic reforms in public transportation. Basically, we want reforms whereby the disabled person using a wheelchair can have easy access to trains, buses and taxis.

We should appeal to the administrative branches of our government regarding these above mentioned tasks. And even when these improvements are not adequate we should commit to using these systems every day with the help of as many people as it takes. By continuing to utilize stations again and again and by visiting the Diet Building while they are in session, we will gain visibility. We already have had some good results such as newly constructed ramps at railway stations and a new route at the Diet Building for wheelchair users.


EQUALISATION OF OPPORTUNITIES THROUGH BARRIER-FREE DESIGN IN ARCHITECTURE AND TRANSPORT FROM A NEW ZEALAND PERSPECTIVE

J. W. STOTT
Disabled Persons Assembly (NZ) Inc., Wellington, New Zealand


Every society has as members, a significant minority of people known as disabled. In the past societies have recognised this group as being different and have responded to them in a variety of ways. The western world, of which New Zealand is part, in coming to terms with disability initially used a "charitable" approach as its response which had, as a side effect, increasing dependence on others for most aspects of daily life and did not recognise the contributions people with disabilities actually can make to a full and richer society.

The United Nations Human Rights declarations (on the Rights of Mentally Retarded People and on the Rights of Disabled Persons) recognise the unique needs and contributions of people with disabilities. Its World Programme of Action Concerning Disabled Persons recognises the need for the promotion of effective means for the realisation of the goals of "full participation of people with disabilities in the normal activities of the community and of equality".

These guidelines, established by international consensus, demand a response from all levels and groups in all societies. Without that human rights response, equalisation of opportunities through the provision of barrier free environments and transportation systems can never become a reality. The planner has neither the vision nor the inclination to incorporate features into design for people who are separated from the rest of society and are not valued.

The Rehabilitation International Charter for the 80's states (Clause 31) "a society which shuts out any segment of its members is an impoverished society" and no one at this congress would disagree with that statement. Yet isn't this just what our societies do when their planners don't make provision for access when planning buildings and transportation systems at the design stage. Societies usually respond by saying that the design features will cost more, or they won't be used by many people.
what they are in fact saying is that people with disabilities are not a value to be taken into account in planning.

It is my view, that the issue of equalisation of opportunities is firstly a human rights issue and requires the building of a receptive social environment in which barrier free design is the expected standard.

The New Zealand welfare system, in which most of the issues of disability have been placed, is categorised by its ad hoc responses to the needs of people with disabilities and is fragmented and poorly co-ordinated. Service delivery tends to be undertaken by non-governmental agencies developed from the charity ethic or from parental pressure groups, who have two major concerns: how to raise sufficient funds to maintain basic services and how to keep their image in the public arena while still supporting their clientele who are not highly valued by the society in which they live.

The main ingredient, which has only begun to be recognised - people with disabilities themselves - has not been seen as a force that can advocate for itself and create the changes in society attitudes that are needed. It is our belief that the major responsibility for creating a receptive environment lies in people with disabilities own hands.

To do this it is necessary for people with disabilities to accept leadership roles, to participate in decision making forums and acquire the skills needed to be effective advocates because of the disadvantaged position many start from. It is possible, as can be seen in the New Zealand setting, for people with disabilities to take leadership roles in politics, in trade union affairs, in business, in sport and recreation, as members of boards such as those delivering health services and in managing organisations of people with disabilities, while still raising families and involving themselves in the daily life of the community. DPA (NZ) Inc is an example of people with disabilities managing their own affairs and it is hoped that others may take up the same challenge.

Until people in society come face to face and work directly with people with disabilities they will not have the opportunity to understand the perspectives of people with disabilities and recognise their role in assisting in planning to equalise opportunities.

In the development of Barrier Free design in New Zealand it was agreed that the first step was the need to prepare a code of practice for planning purposes and the NZ Standard 4121 (1925) was established. At the same time empowering legislation was introduced in the form of the Disabled Persons Community Welfare Act (1975) which acknowledged NZS 4121 in its Section 25.

This Act of Parliament had a direct affect on other Acts previously established e.g. the Local Government Act (1974). Section 331 of the Local Government Act (1974) requires that the Council shall provide safe and easy passage for disabled persons from kerb to kerb of any road, and Section 641(3) provides that the Council shall refuse to grant a building permit where a building does not comply with Section 25 of the DPCW Act. Section 641D of the Act further provides that the Council shall notify the Crown where a Government building does not comply with the DPCW Act.

To clear up any confusions resulting from the recommendatory nature of NZS 4121 (1975) which were mainly caused by building inspectors not recognising that the DPCW Act over rode the provisions of the Local Government Act (1974) as they were not responsible for administering the DPCW Act. As a result the Standard was revised and this was completed in 1985. The NZS 4121 (1985) is mandatory in form and reflects the DPCW Acts empowering intention.

Initial reactions to the mandatory requirements from building designers and developers were mixed - ranging from out right hostility at perceived cost increases to an acceptance that the law was trying to provide for the equalisation of opportunities for people with disabilities.

Barrier Free design in transportation was a later development. While the DPCW Act (1975) Section 16A provided some assistance to individuals involved in employment to purchase motor cars, the majority of people with disabilities were still home bound without opportunity to participate in community activities. Local support agencies assisted their clients through the provision of specialised transport which enabled them to go on outings and attend workshop activity. This limited service did not meet the criteria necessary for equal opportunities and a further community development occurred where groups provided a specialised service on a subsidised basis known as "Dail-a-Ride" between specified times during the working week.

At the same time as these attempts to provide a degree of independence were occurring the public recognition of the needs of people with disability to travel freely was being reflected in the railways and airline systems where access was being upgraded.

In attempting to achieve the goal of full participation and equal opportunities Disabled Persons Assembly (NZ) Inc, the non-government umbrella organisation for the disability sector in New Zealand, developed in association with the Urban Transport Council (NZ), The NZ Taxi Proprietors Federation and Regional and Local Government the scheme known as Total Mobility. This scheme which involves initially placing modified taxis that can handle passengers in their wheelchairs in each taxi fleet provided a twenty-four hour, seven day a week service, the passengers being subsidised by a national and local funding structure. This has reduced the need to spend large sums of money on upgrading public transport systems, has directed resources to those who need them most - the people with disabilities who want to be involved in community activity and has utilized an existing well established service available to the total community.

Since its inception in 1984 Total Mobility has grown to the situation where 54 taxis are now placed in 32 taxi companies and are providing 40,000 monthly passenger trips with fares in the last financial year reaching $2.6 million and covering 68% of the population.

It should be emphasised that while it is essential to have modified vehicles in each fleet to ensure that those with very limited mobility are catered for, standard sedan vehicles can and are used for those who by virtue of their disability cannot use public transport such as those with intellectual disability and vision impairments. In order to achieve equity, as taxi fares are at a higher level than public bus and train fares, subsidies are provided through a voucher system presently giving a 50% discount. These vouchers are issued by agencies who provide services and support to people with disabilities. This means that Total Mobility has become a reasonably priced accessible system available to all people with disabilities.

The lesson learned in this development has undoubtedly been that when people with disabilities clearly identify their objectives, present viable options which can involve existing services as well as service providers in the process then equalisation of opportunities becomes a reality rather than a pipe dream. An integrated system provides a more secure system than a "one-off" programme planned for people with disabilities only.

The New Zealand Human Rights Commission Act (1977) does not include mental and physical disability as a ground for unlawful discrimination. The disability sector in association with the Human Rights Commission is currently lobbying for its inclusion. There is undoubtedly evidence of overwhelming discrimination against people with disabilities.

If equalisation of opportunities is to be realised another part of the equation has to be the implementation of anti-discriminatory legislation. Law can speed up the process of change. Language often causes problems in the process of equalisation of opportunities for people with disabilities. The use of the word "disabled" even in its legal meaning which is concerned with incompetence to hold office as seen in many of New Zealand's laws, has a devastating effect on people with disabilities who hold office.

There is nothing so effective in making those with the power re-think existing beliefs, seek out accurate information and reconsider those beliefs than something which says:- "if you don't you will be breaking the law and you may have to answer a complaint and possibly come to a settlement or go to court".

In rapidly changing times and attitudes DPA believes that legislation associated with an educational function are essential ingredients of the move towards equalisation of opportunities.

Where do we get the perspective and expertise if we genuinely want to equalise opportunity? We can discount politicians, community leaders and professionals who rely on skills and maintenance of a body of knowledge to justify their existence, because they as a group have not had the day to day experience of living with disability in societies which do not place a value on that experience.

We would emphasise that only by listening to and seeking the advice of people with disabilities on matters such as "What are the problems you encounter in going about your life in the community" that planners and professionals will be able to really respond to needs of people with disabilities.

Disabled People's International (DPI) is an organisation that has grown out of the frustration of having well intentional planning done for their people that has not asked the basic questions. "A Voice of Our Own" is a catch cry which says "you can't represent us adequately" as well as "hear our view point - it is important". To achieve equalisation of opportunities requires barrier free design based on the actual needs of the users of services and their perspective must be paramount.

This organisation or its affiliates should never be able to be accused of not providing for the equalisation of opportunities for people with disabilities when planning its own activities or when associated with any activity and not having ensured that the venues and accommodation provide unrestricted access and participation for all. If this organisation concerned with disability and rehabilitation cannot meet that single objective then its ability to recognise people with diabilities having a contribution to society is seriously called into question.

The author acknowledges the support of the R.I. National Secretary for New Zealand, Mr. Ken Munro in the preparation of this paper.

References:

  1. Angus, Quentin E MBE,LLB:
    Is there a Need for Special "Disability Legislation". Paper presented to the International Expert Meeting on Equalisation of Opportunities for Disabled Persons: Vienna, June 2-6, 1986.
  2. Rehabilitation International:
    Charter for the 80's, New York 1981.
  3. UN International Year of Disabled Persons 1981 (IYDP)
    Designing with Care - a guide to Adaptation of the Built Environment for Disabled Persons - 1983.
  4. Advisory Council for the Community Welfare of Disabled Persons NZ
    Mobility Matters - Report to the Minister of Social Welfare 1980
  5. United Nations
    World Programme of Action Concerning Disable Persons - New York 1983
  6. Rae Julian
    Should Disability be Included as a Ground for Unlawful Discrimination under the Human Rights Commission Act 1977? - Speech to a Public Meeting, 24 May 1988.

THE NEW PHILIPPINE LAW TO ERADICATE ARCHITECTURAL BARRIERS

DEOGRACIAS J. TABLAN and A. A. BORJAL
PFRD Office, Quezon City, Philippines


Prior to the adoption of the International Symbol of Access by Rehabilitation International (RI) in 1969 at its 11th World Congress in Dublin, Ireland, easy access to buildings, parking spaces and places of work were not available to the disabled in the Philippines.
The Elks Cerebral Palsy Rehabilitation Center constructed in 1970 in Metro Manila was the first building with accessibility features such as ramps, wide doors, hand rails along the corridors and grab rails in toilets.A few years later one cinema in Greenhills subdivision provided ramps from the lobby to the second floor . A few private homes and a big hotel added ramps for the disabled.
The significant breakthrough for access for the disabled was the First National Conference in Rehabilitation sponsored by the RI affiliate, the Philippine Foundation for Rehabilitation of the Disabled(PFRD) in 1974. Architect Carlos Arguelles presented a paper entitled"Promoting Community Awareness of Architectural Barriers" and endorsed the International Access Symbol of RI and stressed the need for the passage of a law requiring accessibility features in any new public building that will be constructed. His appeal was unheeded but not forgotten.
Eight years later in December 7, 1982, the Batasang Pambansa (Philippine Unicameral Legislature) passed Batas Pambansa Bilang 344 and on February 25, 1983, the bill was signed into law by President Marcos of the Philippines marking a new era of hope and concern for the more than 5 million disabled Filipinos.
BATAS PAMBANSA BILANG 344

The Law is entitled "An Act to Enhance the Mobility of Disabled Persons by requiring Certain Buildings, Institutions, Establishments, and Public Utilities and Other Devices.
Be it enacted by the Batasang Pambansa in session assembled
SECTION 1. In order to promote the realization of the rights of disabled persons to participate fully in the social life and the development of the societies in which they live and the enjoyment of the opportunities available to other citizens, no license or permit for the construction, repair or renovation of public and private buildings for public use,educational institutions, airports, sports and recreation centers and complexes, shopping centers or establishments,public parking spaces, work place, public utilities, shall be granted or issued unless the owner or operator thereof shall install and incorporate in such building, establishment, institution or public utility, such architectural facilities or structural features as shall reasonably enhance the mobility of disabled persons such as sidewalks, ramps, railings and the like. If feasible, all such existing buildings, institutions, establishments, or public utilities may be renovated or altered to enable the disabledpersons to have access to them; Provided,however that buildings, institutions, establishments, or public utilities to be constructed or established for which licenses or permits had already been issued may comply with the requirements od this law; Provided further, that in case of government buildings, streets, and highways, the Ministry of Public Works and Highways shall see to it that the same shall be provided with architectural facilities or structural features for disabled persons.
In the case of the parking place of any of the above institutions, buildings, or establishments, or public utilities, the owner or operator shall reserve sufficient and suitable space for the use of disabled persons.
SECTION 2. In the case of public conveyance, devices such as the prominent display of posters or stickers shall be used to generate public awareness of the rights of the disabled and foster understanding of their special needs. Special bus stops shall be designed for disabled persons. Discriminating against disabled persons in the carriage or transportation of passengers is hereby declared unlawful.
SECTION 3. The Minister of Public Works and Highways and the Minister of Transportation and Communications, in coordination with the National Commission Concerning Disabled Persons shall prepare the necessary rules and regulations to implement the provisions of this Act.
SECTION 4. Any person violating any provision of this Act or of the rules and regulations promulgated herein under shall, upon conviction by a court of competent jurisdiction suffer the penalty of imprisonment of not less than one month but not more than one year or a fine of P2,000 to P5,000 or both, at the discretion of the court; Provided, that in the case of corporations, partnerships, cooperatives or associations, the President, Manager, or Administrator or the person who has charge of the construction, repair or renovation of the building, space or utilities shall be criminally responsible for any violation of this Act and/or rules and regulations promulgated pursuant thereto.
SECTION 5. ALL laws, executive and administrative orders, rules and regulations inconsistent with the foregoing provisions are hereby repealed or amended accordingly.
SECTION 6. This Act shall take effect upon its approval. (Approved on February 25, 1983.)
IMPLEMENTATION OF THE LAW

Soon after the Act was signed into law, the necessary rules and regulations to implement the provisions of this law were formulated by the agencies mandated by the law after a series of meetings with various sectors such as the disabled groups, architects, engineers, bus companies, medical rehabilitation team and various non-governmental agencies/organizations and concerned Ministries

The rules and regulations were published in booklet form and distributed to all agencies concerned with its implementation. Public information drive was undertaken utilizing media, print, television and radio networks including public forums, seminars and integration in the curriculum of schools of architecture and engineering. All these activities generated a greater public awareness and understanding of the needs of the disabled for expansive mobility and accessibility to societal mainstream and economic opportunities.

Within two years after approval of the law, the PFRD and National Commission Concerning Disabled Persons (NCCDP) provided incentives by awarding the Inter national Symbol of Access to several old buildings that complied with the law to benefit the disabled persons.

Under the new government of President Aquino, a program of reorganization was undertaken in all levels of government. The National Commission Concerning Disabled Persons (NCCDP) was re-named the National Council for the Welfare of Disabled (NCWD) . With new leaders in the Council, the implementation of the Accessibility Law was given top priority.

In the span of two years, the achievements are as follows:
1. Renovation of several pedestrian lanes and street curbs-cut-outs in busy intersections in Metro Manila by the Department of Public Works and Highways at a cost of P5 million.
2. The Accessibility Committee of NCWD chaired by Mr. Philip Cruz reported that 19 new buildings with accessibility features in the architectural plans are under construction in Metro Manila and and other cities.
3. Three new completed buildings with accessibility features are :

  • The Occupational Health and Safety Center
  • The Philippine Normal College Library
  • The Manuela Supermart

4. Renovated old buildings with new ramps and grab rails in toilets are:

  • House of Representatives(former Batasang Pambansa) - a project of Congresswoman Estelita Juco, Sectoral Representative of the Disabled
    Ninoy Aquino International Airport
    P.Gomez Elementary School
    Children's Medical Center
    Philippine International Convention Center
    St. Paul's College , Quezon City
    Don Bosco School
    Others

5. Three buses are being re-modeled by a Transportation Company provided with accessibility devices for the disabled

The present government's concern for the disabled of the country was demonstrated by the Presidential appointment of the Honorable Estelita Juco to the House of Representatives to represent the disabled sector. She has forthrightly filed bills to benefit the disabled and among these are amendments to theB.P.344 Accessibility Law to make the law relevant to current times and needs.
Progress is being made towards eliminating architectural barriers to help the disabled within the five years after the enactment of the law but more efforts will be put forth to achieve more opportunities for the disabled to be integrated into the mainstream of Filipino life and times despite the prevailing problems of manifold aspects.


Sectoral Session E-2 Thursday, September 8 14:00 - 15:30

SPECIAL NEEDS POPULATIONS

THE PSYCHIATRICALLY DISABLED

Chairperson: Fr. Nobuo Murata Preventive Section Manager, Kodaira Health Center (Japan)
Co-chairperson: Prof. Dr. Kurt-Alphons Jochheim German Society for Rehabilitation of the Disabled (F.R.G.)

SPECIAL NEEDS POPULATIONS

THE PSYCHIATRICALLY DISABLED

NOBUO MURATA
Preventive Section Manager, Kodaira Health Center, Tokyo, Japan


I should like to start by welcoming you all to Tokyo for this auspicious occasion. In this Sectoral Session we are going to discuss the particular needs of psychiatrically disabled people. All speakers and participants here now are those who have been working in, researching or developing, issues concerning people with this particular type of disability.
The 1981 International Year of Disabled Persons had a significant impact upon creating "full participation and equality for disabled people". This also had a great deal of positive effect for people with mental disabilities in many countries. Japan's new Mental Health Law was introduced in July 1988. This ained to emphasize protection of the individual's human rights, as well as easing the ways in which people with mental disabilities can return to the community, in comparison to the old law. Thus, I am delighted that the 16th World Congress is being held in Japan at this particular time.
However, I would assume that many countries still have a variety of problems to solve - usually different, according to their particular culture and conditions - in order to realize full participation and equality of disabled people. This is particularly true of Asian countries. The 16th World Congress is the first to be held in Asia and is therefore a very important means of addressing these vital issues.
The distinguished speakers in this Session are leading experts in their particular fields....for example, specialists in developing self-help groups, improvement of daily living methods, technical supports, day-care centers and so on. Also, the investigation of medical treatment and social welfare, including administration and finance.
I believe that this discussion will give us a great opportunity to learn from each other, and that - in this way - the World Congress will prove to be the next step forward from the 1981 Year of Disabled Persons.
I would ask each of us to use the forthcoming disvcussion as a means of strengthening the effectiveness of our everyday work with and for mentally disabled people.
Thank you very much...


REALISTIC APPROACHES IN PSYCHIATRIC REHABILITATION

S. ROST
Psychiatric Rehabilitation Department, Regional Hospital, Sweden


At the Psychiatric Rehabilitation Department in Orebro, we have developed a smoothly running organization.
Coordination - continuity, staff education, in- vestigation - before admission program of rehabilitation, trainig and control, final assessment, first class equipment, different accomodation units, operative rehabilitation units, case-workers, physical trainig, group activities, social training, traditional occupational therapy, industrial occupational therapy, lecturing.
An adequate follow up - feed back - system between staff and patient and organized aftercare routines will be discussed.
Systemately wrapped out the positive friendship in the patient and his family encreases their motivation in the rehabilitation work.


MENTAL DISABILITIES

ISAO KOSAKA
Association of the Psychiatrically Disabled in Kanagawa Prefecture, Japan


I should like to tell you about "Asunaro-kai" - our "Association of Patients' Groups" - which was first formed twenty years ago at Hasseiso Hospital, a psychiatric hospital in Miura City, Kanagawa Prefecture. At that time, occupational and recreational therapies were not covered by any form of medical insurance, as they were not recognized as valid medical treatment by psychiatry. This would not occur until the government approved this several years later.

Nonetheless, this particular hospital provided both occupational and recreational therapy. Some patients worked outside the hospital, and part of their wages were taken to provide funding for recreational activities for all the patients.

In the patient's daily discussion time some questioned this customary practice of pooling wages. They concluded that since the wages had been earned by each individual worker, the hospital had no right to take even part of it.

Therefore, hospital staff and patients' family members worked together to form Asunaro-kai - the purpose of which was to collect funds for recreational and occupational therapy. Membership fees and donations were gathered to establish the Asunaro Fund. This provided for the purchase of printing and sewing machines for training purposes.

At about the same time the hospital changed its administrative policy. Consequently, doctors who had supported the association left the hospital. Thus at this time, Asunaro-kai, which had been formed for patients, evolved into a new, self-supporting group of patients. Our slogan was "Asunaro-kai: Aiming at Better Psychiatric Treatment."

From now on it was the patients and their family members that played the central role in establishing the renewed Asunaro-kai, with case workers, doctors and other sympathizers supporting them.

Asunaro-kai left the hospital and set up an office at my residence. We started activities independent of any doctors or medical setting. However, I had a hard time finding fellow patients who were willing to participate in the association at first. Most patients' groups in Japan would have found it impossible to maintain their activities without assistance from institutions such as hospitals, public health centers, etc.

Upon leaving the hospital I started writing thank-you letters to my fellow patients still in hospital. This was a "spur of the moment" thing, but they were very pleased to hear from me. During their years of hospitalization, some had never received any letters - not even New Years greeting cards. I wrote postcards day after day.

I must admit this letter-writing sometimes became burdensome to me. My fellow patients would tend to become overly concerned when I took a break from writing for a while. Price increases in postage and telephone charges have always been a blow to our patient group activities also. However, I was determined to continue my correspondence with my fellow patients as I knew that for some this was their only hope...In the meanwhile, the groups developed various creative activities independently.

1) Information about Employment Opportunities

When I visited the Asunaro-kai in Yokosuka, I saw members were making reports using memos. They exchanged information about job advertizements they had seen posted on walls and telegraph poles. They tried to find work in which their illness would not handicap them. Moreover, they would accompany each other to interviews. I was much impressed with their ingenuity, as I had never thought of finding work through such means but focused mainly upon public employment security offices.

2) Local Workshops

About seventeen years ago we came to the realization that we needed some sort of residential facilities, such as employment training facilities, that would provide a halfway point between hospital and the real world. We visited several rehabilitation facilities in Tokyo and Kawasaki, and I myself was quite impressed with them. However, other group members didn't agree: they wished to live in a normal neighbourhood where natural communication could occur, rather than in a rehabilitation facility that was like a hospital building.

Eventually, Asunaro-kai opened two workshops in Yokohama and Yokosuka. We made every effort to become part of the neighbourhood. Thus, when the Yokohama workshop celebrated its fifth anniversary, the local block president was the Master of Ceremonies.

3) Housing Problems

I have had no experience of living in a community home so far. When five of my friends left hospital they moved to my neighbourhood. Each rented a room or apartment. A local senior member of Asunaro-kai helped them with activities of daily living. He taught them how to cook, to do laundry, to use gas appliances safely, and so on. Sadly, he committed suicide in the end, saying that he was too tired of life to go on.

4) Marriage

Several couples have met and married because of our association. Not all are happy, there have been some divorce cases. Patients' families do not necessarily encourage us to marry. Sometimes our illness affects our marriage and leads to divorce.

However, it is natural for everyone to be born, become husband and wife, and leave each other. This is everyone's experience, those without mental illness are much the same in this respect. What is now required is encouragement and support from fellow members. In cases where both are ex-patients, we find that other similar couples, especially wives, have been a great help in bringing up children and in education.

5) Suicide

Is it possible to prevent suicide? From over twenty years of my own experience, I can state that quite a few suicides occurred when our activities lacked much supportive element.

One person committed suicide after he was discharged from his job on account of his former history of mental illness. Another killed himself because he was forced to do a dirty job for only half the wage most people received.

However, over time, many patients' groups have been formed, and the association has grown larger. Consequently we have fewer suicides at this time. Now there are more of us to rely on for self-support when we need it or we're in trouble.

Also, each of us has our own unique role amongst ourselves, which is justly recognized and acknowledged by each other. Thus we are encouraged to conquer life's problems and go on.


PSYCHOSOCIAL DISABILITY AFTER SEVERE BRAIN TRAUMA

E.B. SCHERZER
Rehabilitation Center Vienna/Meidling, Workers' Compensation Board, Vienna, Austria


Our twenty-year experience at the Rehabilitation Center Meidling in Vienna, Austria, has shown psychosocial disability to be the major problem after severe head injury. This disability is defined by difficulties in communicating with others and in occupying the former place in one's family, community and society. It may be caused by various mental and physical dysfunctions. Their combination is particularly deleterious and proves more detrimental than the sum of its individual components. Thus, many factors influence the brain-injured individual, and by their interaction psychosocial disability is finally determined.

I. Causation of Psychosocial Disability

In the brain-injured we would like to distinguish between primary posttraumatic factors due to sequelae of organic brain damage. pre-existent individual factors and actual environmental factors. Moreover, secondary psychological reactions both of the patient and of his surroundings must not be overlooked.
Among the organic posttraumtic factors, the psycho-organic brain syndrome must be mentioned in first place because it impinges enormously on the individual's life by increased fatigability, memory deficits, poor sensorimotor adaptability and long reaction time, poor concentration, short attention span, distractability, perseverations, poor judgment, slow thinking, decreased abstraction, aspontaneity, poor initiative, logorrhea, impulsiveness, poor associations, increased irritability, affective disturbances, etc. Social contacts may easily be impaired by the mentioned psychological abnormalities. In some very severe cases orientation disturbances and confabulation are still seen long after the brain trauma, creating many serious problems for these unfortunate people and their families.
Communication disturbances, too, cause psychosocial disability as they render impossible deeper interpersonal contacts. Most detrimental are aphasias with the inability to speak one's language and to understand other persons. However, severe dysarthria and aphonia preventing the affected subject to make himself understood can have a similar effect.
Various additional physical impairments can also attribute to psychosocial disability, though in a lesser degree than the aforesaid disturbances. Here we have to mention severe disorders of movement like cerebral paresis and paralysis, spasticity, rigidity, ataxia, vestibular disturbances, dyskinesias and tremors, but also impairments from cranial nerve lesions, especially when they lead to blindness and deafness. As a late aftermath posttraumatic epilepsy may in rare cases, due to frequent fits, especially of the grand mal and psychomotor (temporal lobe) type, give rise to social difficulties.
Besides the mentioned organic posttraumatic factors, particular personality traits of the patient and his actual life situation as determined by his environment, play an important role in the causation of psychosocial disability. Pre-existent individual factors like inferior intelligence, neurotic or psychopathic tendencies increase the danger of social difficulties. The same holds true for the existence of a psychological conflict situation which has already consumed a good deal of the person' energy so that he is now unable to carry the additional burden of his posttraumatic handicap. Moreover, we have to consider the situation in which the individual is placed by his fate. Such actual environmental factors are sometimes very detrimental like the nonacceptance of the disabled by society, a high unemployment rate, geographical and ethnical barriers, e.g., when living in a remote village or when staying in a country as a foreigner.

II. Secondary Psychological Reactions

Patient-centered secondary psychological reactions are often negative and consist of social withdrawal and isolation. They easily induce depressive states when the patient feels that he is alone, or when he encounters marital, sexual, educational or vocational problems. In such a situation he may engage in alcohol or drug abuse. Disabled persons often state that besides isolation their dependence on others is the worst infliction.
Secondary psychological reactions of the surroundings are seen with family members, friends, neighbors and workfellows. As negative factors grief and depression, disinterest and frustration are observed. Excessive or no demands are put on the patient whose capabilities are thus overestimated or underestimated. Often overprotection of the disabled person by his close relatives is evident. Such inadequate reactions of the family can lead to marital infidelity, divorce or restriction to a custodial role. Unemployment of the patient, though some kind of easy work could be done. proves to be another most detrimental circumstance.

III. Psychosocial Rehabilitation Measures

From what has been said it is clear that endeavors to overcome psychosocial disability with its negative repercussions on the patient and his family, must be widespread and persistent in order to effective. Treatment in this direction starts already at the hospital and is intensified at the specialized rehabilitation center, but must absolutely continue after discharge of the patient. The crucial point of psychosocial rehabilitation is when he returns to his home. Then reintegration and resocialization must take place. Caring for the disabled after brain injury includes medical treatment. various training programs, guidance, counseling, occupational and workshop activities, self-help groups and family groups, organization of spare time activities, etc. A large-scale rehabilitation concept comprises a patient-centered specific training program as well as family-based and community-based resocialization strategies.
Patient-centered rehabilitation must, of course, be specifically tailored to the needs of the disabled person. Medication either stimulates or sedates the patient. It is anticonvulsive if epileptic fits have occurred. Reality orientation and behavior corrections may be necessary for reintegration of the patient in his social environment. Neuropsychological treatment including reaction training, memory training and attention training, etc. try to reduce the posttraumatic organic brain syndrome which is nearly always present in these cases. Problem-orientated individual psychological therapy is provided in special situations. Autogenous training according to J.H. Schultz and progressive relaxation according to Jacobson prove beneficial just as bio-feedback methods frequently have a good influence on tense and nervous persons. Physiotherapy in its various forms and sports activities have a positive effect not only on the physical state, but also on the morale of the treated person. Increasing the range of mobility is essential for outdoor activities. Those confined to a wheel chair must learn to govern it properly and to overcome minor obstacles. Persons dependent on crutches must get skilled in using these aids. Continuation of language or speech therapy is most important in patients with such communication disturbances. Their training can be assisted by small special computers and typewriters. Specific programs must be provided for the blind and deaf to improve their orientation and communication. Similarly, those having deficits in daily living activities must be instructed in feeding, dressing and hygiene skills. They are later advised in more advanced living skills at home and outdoors. Guidance and counseling will finally help such delicate decisions like time management, paying and saving money or budgeting. Occupational therapy, art therapy, mostly in music, drawing and painting, are as beneficial for the resocialization as are educational and vocational training programs. Of paramount importance is close communication of disabled persons, i.e., gathering in patient, joint family and self-help groups. There experiences are shared, common problems are discussed and appropriate strategies are developed. The feeling of isolation is overcome and friendships are built.
Family-based rehabilitation should also include friends, neigbors and fellow workers. Fundamental is that these persons get as much information as possible regarding the specific type of impairment. dysfunction and handicap as well as regarding likely therapeutic results and an eventual improvement in the state of the patient. However, counseling should not only be in the medical field, but should also cover educational and vocational training. It must be our aim to set up an optimal climate for the disabled person in his whole environment, providing him with the feeling that he is respected, loved and considered an equal member of the group. Attention must be paid to the fact that demands put on him are in accordance with his abilities. Feelings of inferiority in the patient should be discovered at an early phase and should be dissolved by appropriate measures. The atmosphere has to be positive and stimulating for further improvement of the disabled individual's situation. The family should consider co-operation with a social worker who has been trained in the field of rehabilitation. If for some reason the family is not able to handle the situation, a case-manager or care-taker should be accepted. Besides guidance and counseling, he can offer practical help in many ways.
Community-based rehabilitation should provide daytime clinics with various kinds of outpatient training programs, psychological, guidance and counseling facilities, occupational therapeutic units, sheltered workshops, self-help groups and family groups, organizing spare time activities, joint meetings, dinners, outings and various festivities, cinema and theater performances as well as concerts. Leisure and recreational skills should pave the way to more productive activities, perhaps resulting in a return to work or school. Unfortunately, there is still a scarcity or even an absence of many of the aforementioned facilities in many countries. It seems that for the accomplishment of psychosocial rehabilitation we will have to go a long way. It will be necessary to stimulate communities and governments to ameliorate the situation of the psychosocially disabled by providing the indicated necessary facilities. Moreover, private welfare institutions should be fostered in their endeavors for improving the fate of such persons in general; for we must not forget that the public opinion in wide areas of this world is not in favor of the handicapped or disabled. There is frequent nonacceptance of these individuals by our society. Paying a pension to an invalid is certainly not enough. Financial aid must be accompanied by social acceptance and love. Then the disabled person can find his due place in the community. Only by the collaborative efforts of all those concerned will it be possible to bring the brain-injured patient to his highest attainable level, allowing him to live the best life he can.

Iv. Conclusions

As said before, the situation for persons with psychosocial disablity is far from being satisfactory in most countries, if not in all countries of the world. An improvement of this deplorable situation is absolutely necessary as medicine has made an enormous progress in recent years and has rescued thousands of victims of brain trauma who now need proper aftercare and more attention. Our aim must be to organize more help for the disabled in general, which can only be achieved by co-operation and collaboration of medical and paramedical, social and community, governmental and private staff. For this reason and in conclusion of my paper let me formulate two definite goals as regards the rehabilitation, in Austria or elsewhere, of brain-injured persons who are invalid in the sense of psychosocial disability:

  1. Establishment of a nationwide network of facilities and compound services that will improve the life quality of such individuals, and
  2. Correction - through mass media information - of the current attitude of the general public towards the disabled which, unfortunately, in many ways, continues to be one of refusal and nonacceptance.

FOUNTAIN HOUSE

A MODEL OF REHABILITATION SERVICES

RUDYARD PROPST
Fountain House, New York, U.S.A.


Fountain House has been in existence for fory years. It has pioneered a unique way of working with severely and persistently mentally ill men and women. Today there are some eight hundred members of Fountain House, over four hundred of whom come to our clubhouse everyday. In the past decade, through our training program, over a thousand people have come to study our model, and as a result there are over two hundred and forty Fountain House model clubhouses in the United States and around the world. Fountain House offers no cure for severe and chronic mental illness. That illusive goal still lies ahead of us in the world of research in psychology, nuero-physiology and pharmacology. What it does offer is a way for men and women suffering from these illnesses to return to the community and regain lives of striving and dignity.

First, I will try to define for you what is meant by the clubhouse. The clubhouse is a place that brings the people who have suffered the devastating effects of mental illness into the community, rather than banishing them from it. It is in the community rather than away, in the country, or in isolation from the rest of society.

The clubhouse is a place of hope because it takes as important what is normal rather than what is pathological. In the hospital or in the psychiatrist's office the disease, the sympton, the pathology are the principal concern.

However, every severely mentally ill person, no matter how long the duration of their disability has many aspects of normal behavior that are ignored in the hospital or medical setting. This person may still certainly be able to read, to count, to sweep a floor, to answer a phone, to write, to help prepare a meal, to dress neatly, to weed a garden or sing a song and do many more of a hundred other things. These normal activities are of little matter in the hospital, in the clubhouse they are the focus.

The clubhouse provides no medication or indivibual or group therapies. The model is not in opposition to such things, and we often help people to find appropriate doctors and clinics. However, such activities are outside the clubhouse, as ther are outside the work places in the lives of those not suffering from mental illness.

Severely mentally ill people come to the clubhouse not as patients but as members. They come to make their contribution not to present their symptoms. They are welcomed into the circle of staff and members who make up the clubhouse community and they become part of that community. Membership is entirely voluntary. Members come because they wish to, not because they are coerced or prescribed to do so. They come because the clubhouse satisfies that basic human need for a place to come where one is expected, needed and appreciated.

The day of the clubhouse is work-ordered. Staff and members together are responsible for the running of the clubhouse in every aspect. Answering phones, greeting visitors, typing letters, planning menus, shopping for food, preparing and serving lunch, cleaning up afterwards, computer programing, data processing, record keeping and house cleaning are but a few of the tasks undertaken by members and staff of the clubhouse, and most of this work must be done every day for the clubhouse to thrive.

Like membership, all work in the clubhouse is voluntary. No member is forced to do any task either by direct order or coercion. Often at Fountain House, when members first begin to come to the clubhouse, they will simply sit and do nothing. They are made welcome by members and staff because it is recognized that the very act of coming to the clubhouse may be one of great courage and resolve for someone who has gone nowhere and done nothing for a long, long time. They are encourage to participate, but participation is not demanded as condition of membership.

What happens is this, new members see others working and contributing and being appreciated by others. The atmosphere is lively and energetic and both safe and enticing. The new member begins to relax, to become interested in the surroundings, and begins to take part. This process may be long or short, but once someone does begin to take part in the life of the clubhouse, he or she begins to restore to themselves the precious human right to meaningful work that contributes to the community.

In this process of meaningful work that we at Fountain House believe is so essential to rehabilitation, other things degin to happen to our members. Stamina increases and energy levels rise. Members who at first come only half a day stay all day. Members who come only two days a week begin to come everyday the program is open. This is because they are interested and engaged in something meaningful to do. In hospitals and other so-called therapeutic settings, people have little to do of importance except present their symptoms. The rest of the time is spent in "occupational therapy", "daily living skills training" or other time passing activity that has little meaning to the individual and contributes nothing to the general good. In the clubhouse, symptoms are the least important things. Talent and energy that contribute to the life of the community are celebrated, and believe me, that talent and energy is there to celebrate.

Through the meaningful work done in a place where one is needed and welcomed, a sense of ownership and belonging develops. This sense of ownership and belonging helps to build, or rebuild, self confidence and self worth, two things that the so-called normal world has taken from the mentally ill. It has been taken from them by denying their essential humanity in the peocess of defining them only by their symptoms, diseases and abnormalities, and never by their potential talents and gifts.

Staff in the clubhouse, though many of them are trained as social workers or in other mental health disciplines, are not therapists, nurses or overseers, but people who are working side by side with the members of the clubhouse. The ideal situation for staff of a clubhouse is this: the staff feels ultimately responsible for all the tasks that must be done to operated the clubhouse well, but they cannot do the work themselves because there is too much to do. This way, and only this way, are they forced to truly engage the members in the work of the clubhouse. They do so out of necessity, not out of therapeutic intention, good will, or other vague motives. Two people cannot prepare lunch for one hundred, but twenty can. So two staff members must find eighteen members to help ensure that everyone eats. This is an extremely compelling situation in which real relationships develop between staff and members that are centered in the tasks of the clubhouse.

Sharing tasks in the clubhouse provides something that is external to both staff and member, the work that needs to be done. The tension is located in the task rather than between the two people. They must join together to get it done, and through this joining and accomplishment they view each other as worthwhile. This sharing is not artificial but based on a common experience.

Out of this situation relationships of mutual respect and interdependence grow, and out of these, friendships develop between members and staff and other members. It is absolutely essential that staff employ their whole person in developing relationships with members. The classic posture of the therapist in clinical settings---remote, impersonal, displaying no personal feeling, about whom nothing is known by the patients is antithetical to the posture that. is required; being knowable, displaying one's humanness, responding naturally in the situation. Through the sharing of the work of the clubhouse members realize that the staff is not superhuman, but human, that staff have needs, can be sad, frustrated or even face failure at a given task. After years of hospitalization during which staff are often viewed as omnipotent by their patients, this is a startling and normalizing change.

Staff in clubhouses also experience a great change in their attitudes toward members whom they had viewed in other settings as mere collections of symptoms to be diagnosed and manipulated. In the place of patients from whom they stood distant and apart, they recognize whole people with whom they share a common humanity.

The human need--the human right--to meaningful relationships with other people is restored to the men and women who are clubhouse members by their own contribution to the clubhouse community. They are responded to, as they may have been in childhood or some distant past, as important and meaningful beings to those around them. These relationships have not been bestowed upon them or given to them. They have earned them through their own efforts.

As men and women who are clubhouse members gain confidence, increased self-respect and the respect of others, they often begin to yearn for a wider world in which to prove their new found skills and capabilities. Despite the comfort, security and respect that the clubhouse offers, it is not enough. Our members want to be not only part of the culture of the clubhouse, but part of the larger society in which they live.

Without opportunities in the larger community, the clubhouse would become as stifling and limited as any institutional setting, no matter how benign.

Recognizing this, John Beard, our founding director, invented something called Transitional Employment. Transitional Employment provides a bridge across which members can walk into the world of work in the larger community. It is the chance for real work in a real place of business at a real wage. It is not a charitable arrangement. It is expected that the member will perform the job at the regular level of productivity. It is expected that the employer will pay the same wage earned by anyone doing the job. The wage will be paid directly to the member, not to the clubhouse, for it is the member's effort that has earned the pay.

The clubhouse staff is responsible for finding entry level jobs for members in places of business in the community. This is not as difficult a task as it might seem, for the staff have come to believe in the capabilities and capacities of the members of their clubhouse. The staff guarantees that the job will be done, promising that they themselves or another member will be there if someone is ill or otherwise cannot come to work.

There is no interview for the job. Thus, no member has to explain his lack of work history or illness. One full time job is usually divided between two members each working half the day. This is done both to ease the possible strain of working in the real world and to provide the on-going support of the clubhouse for the other part of the day. The member returning from work to the clubhouse can share his triumphs and problems with his friends there. A member going forth to work goes with the hope and best wishes of all in the clubhouse.

It is anticipated that a member may sometimes fail at a Transitional Employment job. Such failure is not seen as devastating or shaming, rather the attempt of the member is celebrated and he or she is encouraged to try again and again to complete a placement. Many of our members at Fountain House have tried several Transitional Employment jobs befor completing a placement. Our employers also realize that this may be the case, but since they have been promised coverage for the job, it does not upset them. Presently at Fountain House, 147 men and women go to work at 41 places of business everyday earning well over a half million dollars a year.

I would like to take a moment to contrast Transitional Employment with Sheltered Workshops. Sheltered Workshops have been established and are popular programs in the United States and many other countries. They provide work for disabled people in a protected and comfortable setting that does not place a high degree of stress upon the individual nor demand a high degree of performance. They have low expectations of their employees and consciously avoid challenge or the need for initiative. While these conditions may suit the needs of the mentally retarded, we at Fountain House believe they are harmful to the people we are endeavoring to help--the men and woman with severe and persistent mental illness.

Sheltered workshops are detrimental to them because they are outside the reality of the work world by their very nature. Just as we provide real work within the clubhouse, so, with Transitional Employment there is real work in the community to be performed at competitive standards. The clubhouse exists to enable members to re-establish themselves in the real life of the community, not in a sheltered haven away from it. It is to the real life of the community that our members yearn to return.

Another advantage of Transitional Employment over the sheltered workshop setting is that when our members decide they would like to attempt to work full time, independent jobs they have had experience in working in real firms and real place of business. The change from transitional, part-time employment to a full time job is a smoother and easier one than coming from a sheltered workshop into a real work situation.

It is the ambition and hope of many, though not all of our members, to obtain full time jobs. We support this through our Independent Employment Program that helps find jobs for member, to prepare resumes, develop interviewing skills and prepare for tests for various government civil service positions. Besides this technical help, the program also provides the social support of the clubhouse on evenings and weekends.

This brings me to a most important element of the Fountain House way of working to rehabilitate the severely and persistently mentally ill. As we know, the illnesses that these men and women sustain are often cyclical in nature. Our people can have long periods of reasonable stability and then become actively ill again. They can be re-hopitalized, they can lose their jobs, they can suffer other physical ilness beside their psychological impairment. On the other hand, there are times of joy and celebration of positive changes in life. Whatever the situation may be, the clubhouse is always there for the members. There is no end to clubhouse membership, no termination of the clubhouse's concern for the members. As one never ceases to be part of one's family, so the member can always return to the clubhouse family of which he is a valued part. Like a family, we have no days in which we are closed to our members. Fountain House is open 365 days a year. It never closes and it never goes away.

Though it is not my purpose here to present research on the clubhouse model, I would like to share with you some of the outcomes of clubhouse membership that we are beginning to see as the number of clubhouses has grown over the last decade. We have had less research on outcomes than we would like but there are several encouraging and significant things to report.

Within Fountain House itself, a three year study of over five hundred members produced the following data: for all members 80% of the time was spent in the clubhouse day program, some kind of employment, either Transitional or Independent, or in school receiving further training. Only 3% of the time was spent in psychiatric hospitals and of that time, 70% of the hospitalizations were of 30 days or less in duration. Less than 10% of the total time was spent out of touch with the rehabilitation process except for the reaching-out contacts of Fountain House. Time spent in employment was significantly larger than would have been predicted for such a population. Nearly 30% of all member time was spent in Transitional Employment and almost 15% on full time employment. A substantial 44.3% of all member time was spent in some sort of employment. A further trend indicated that the longer a person had been a member of Fountain House the more likely he or she was to have found full time employment. Of those who had been members for five years or more (including the time of the study) some 66% percent had obtained full time employment.

Studies undertaken by other clubhouses indicate that clubhouse membership reduces by 50-60% the number of rehospitalizations necessary for members, and that the length of stay is reduced by up to 75% of previous durations. These findings are from clubhouses in rural as well as urban settings. They indicate that a place in the community enables severely mentally ill people to stay in the community leading lives of greater normalacy for longer periods of time.

I would like to touch on a development that has occurred in the United States in recent times that parallels something that has come into being recently in Japan: the family movement. When I first began my career in mental health, the family was seen as the focus of most of the problems of the severely mentally ill. Besides the tragedy of the illness of a beloved brother or sister, parent or child, the family also had to bear the guilt and stigma of the illness. Further research has shown this to be an unwarranted conclusion, severe mental illness has its roots in physical condition, not in family interaction. The National Alliance for the Mentally Ill is an organization in the United States similar to the Japan Association of Families of the Mentally Ill. It is an organization of family members who have banded together to pressure the government and the mental health professionals to provide the means to a better life for their family members, as well as to increase funding for research into the cause of severe mental illness. They are becoming in the United States, strong advocates of the Fountain House Model of Community Rehabilitation, in several cases leading the fight to establish clubhouses in their states or communities.

The great encouragement we have received from families is extremely moving to me. These people who have bravely born the brunt and the pain of the illness of those near to them are most eloquent advocates of what our model stands for: the fullest possible life within a caring community with the greatest dignity and normalacy possible for the severely mentally ill.


AGRO THERAPY

A NEW CONCEPT FOR THE REHABILITATION OF CHRONIC SCHIZOPHRENICS

MOHAMMAD RASHID CHAUDHRY
Fountain House, Lahore, Pakistan


INTRODUCTION
Pakistan is primarily an agricultural country. Nearly 70% of its population lives in villages and are dependent either on agriculture and other related activities for its livelihood. It is, therfore, essential to evolve special programmes for the rehabilitation of persons suffering from mental illness, of whom 50% belong to rural areas.

2. Experience of Fountain House, Lahore, during the last 15 years has shown that its programme and activities attract mostly literate persons from urban areas. Various follow-up studies conducted at regular intervals have shown the effectiveness of Fountain House services for this group: there is no comparative data to prove the effectiveness of a similar programme for people from rural areas.

3. This problem could be approached by directing efforts to evolve a special programme in a rural setting to suit the needs of persons from the rural background or from urban areas interested in agro-based activities. Experience at Fountain House, Lahore, has indicated that not only the urban setting of its programme but also the nature of its activities do not hold special attraction for illiterate and unsophisticated subjects from rural areas. It is therefore advisable to conceive and develop a programme in the rural setting to cater to the needs of the mentally ill persons from rural areas who can be engaged in agro-activities. This project could also be used to engage such chronic schizophrenics, from urban areas who are interested in agro-based activities.

4. THE AQUISITION OF LAND
With the concept of agro-therapy in mind, the Government of the Punjab was approached to allot, to the Fountain House, a piece of land in a rural area for the purpose. After long negotiations and efforts, the Government agreed to give 25 acres of land near Sheikhupura in 1982. Later on another piece of 15 acres of land was leased graciously be the Governor of the Punjab, at the request of the Project Director. The total 40 acres of land has been converted into a long lease for 99 years with a view of ensuring the continuity of the project and to meet the future expansion needs of the programme. It took sometime to get possession of the allotted land after completion of formal documents.

5. FACILITIES AND ACTIVITIES
Construction of residential rooms, a guest house, kitchen etc. was under-taken in 1983, and about ten members were transferred from Fountain House, Lahore, for work on the land. A large number of fruit trees, such as oranges, lemons etc. were planted. A special area was earmarked for vegetable cultivation. The other seasonal crops were wheat, sugar cane, maize, rice etc. One tube-well was constructed in 1984, and another one attached recently to augment the canal water for the irrigation of the fields and to meet the needs of the members of the fish farm.

6. The Punjab Government, in addition to land, also provided a tractor for the farms. The District Council, Sheikhupura helped in constructing metalled roads to link the farm with the main road. The Agriculture, Forest, Fisheries, Wildlife and Livestock Departments were also assisted the Fountain House in the development of the project. Agricultural University, Faisalabad and Agricultural Research Council, Islamabad have also offered to develop other projects such as mushrooms, bee-keeping and growing special varieties of fruit and vegetables on that Farm.

7. From the very beginning the project was conceived as a multi-purpose project consisting of a variety of activities connected with farming and agriculture industry. Construction of a large fish pond was completed in 1985. A Poultry Farm for 1500 chicks and Teddy Goat Farm for about 100 teddy goats were completed before the visit of the President of Pakistan in 1986. A mini zoo comprised of peacocks, deer and ducks has recently been added to the Farm. All these activities can engage at least 25 members on regular routine jobs. A much larger number could be engaged in the cultivation of crops and vegetables. The project envisages a total of 50 members. However, the maximum number will depend on the residential accomodation available on the Farm. At present accomodation exists for about 20 members. Day trips are arranged for members of Fountain House, Lahore and this manpower is used for seasonal activities.

8. PARTICIPATION OF MEMBERS IN VARIOUS ACTIVITIES
The members for the agro-therapy project are carefully assessed on various jobs at the Farm and then assigned to the particular work units such as Fish Farm, Poultry Farm, Teddy Goat Farm, Mini Zoo, Gardening and cultivation of crops and vegetables according to the interest of the members so that they can seek satisfaction and pleasure from these activities which are essential for their mental health and happiness.

9. OBJECTIVES OF THE STUDY
Agro-therapy is altogether a new concept in the rehabilitation of the mentally ill. To test its usefullness and effectiveness in the rehabilitation of chronic schizophrenics we have developed it into a research project which was started in February 1987. The study objectives are as follows:

  1. To develop a rehabilitation programme based on agriculture and other related activities capable of engaging the interest of chronic schizophrenics from rural as well as from urban areas.
  2. To develop instruments and techniques for the recording of meaningful changes in the behavior and mental state of chronic schizophrenics resulting from agro-therapy rehabilitation programme.
  3. To evolve suitable techniques and procedures for assessing the effectiveness of agro-therapy rehabilitation programme.
  4. To assess the value of various activities of the agro-therapy programme in the rehabilitation of chronic schizophrenics from rural and urban areas.

10. CRITERIA OF SELECTION
The criteria of selection consists of the following parameters:

  1. Age...20 to 50 years
  2. Sex...Male
  3. Diagnosis...Chronic Schizophrenics
  4. Duration of Illness...5 to 10 years
  5. Capable of following simple instructions
  6. Having either rural background or interest in agro-based activities.

METHODOLOGY

PROCEDURE FOR SELECTION
11. All members residing in Fountain House are screened in phases on the basis of the criteria for the agro-therapy project. Members with rural background or having interest in agro-based activities and willing to go to the Farm are listed. The selection for the agro-therapy project is made from the list through a process of randomization to fill the available places. The total number of subjects in the study at the end of two years is expected to be fifty.

12. The selection of members for the Farm is made by a Selection Committee consisting of the following:

  1. Project Director
  2. Research Consultant
  3. Psychiatrist
  4. Psychologist
  5. Deputy Director (Rehabilitation)
  6. Project Incharge, Fountain House Farm.

13. The Committee decided on the basis of the data obtained by filling the following three forms:

a) Relevant bio-data of members
b) Social evaluation report of the Tutor and Psychologist
c) Psychiatric/Medical Evaluation Report.

These forms, taken together, would provide the base line data for subsequent rating and comparison.

14. The interest of the member in agro-based activities is the foremost criteria irrespective of his rural or urban background. All these members who are interested in agro-therapy project are initially sent to the Fountain House Farm. They are taken around, shown various activities, introduced to the staff, provided with the orientation and encouragement necessary for the members to motivate and stimulate their interest.

15. The Committee after taking into account the relevant information decides that a particular member would be suitable for the agro-therapy research project. The consent of the member of his family is obtained before his placement at the Farm. The choice of the activity the member would like to participated in, is accepted so that his performance is positive and satisfying.

16. A member so selected for the agro-therapy project is placed on probation for three months to cultivate and develop his interest and to test him for his continuity in the research project. A member who successfully qualifies in the probationary period would continue to work in the agro-therapy project while those who fail to satisfactorily complete the probationary period and do not show any positive signs of involvement are returned to Fountain House, Lahore as they are unsuitable for the study.

17. UNIVERSE OF THE STUDY
The universe of the agro-therapy project is the Fountain House, Lahore from where all the members would be drawn for the research project as per the selection criteria and procedure mentioned above.

18. SCOPE OF THE STUDY
The agro-therapy project os restricted to study the following aspects:

(a) Work performance in various agricultural or agro-based activities.
(b) Performance in social activities.
(c) Performance in religious activities.
(d) Performance in sports/recreation.
(e) Performance in daily living.
(f) Performance in literary classes.
(g) Competence in daily living.

19. SAMPLING UNIT
The members who are motivated for the agro-therapy project form the sampling unit from which selection is made as indicated earlier.

20. DATA SOURCE
The data would be obtained from the individual files of the members, assessment and evaluation reports of supervisory and research staff including the psychiatric and medical reports.

21. ASSESSMENT AND EVALUATION
Proper records as indicated are maintained for monitoring progress. A seperate file for each member is kept, which contains performace for various activities filled in by the supervisory staff and counter-checked by the research staff. The degree of performance of the members in each activity would help in measuring the effects of agro-therapy.

a. The activity reports are filled in by the Unit Incharge daily who is properly oriented.
b. The weekly summary is filled in by the Project Incharge.
c. Weekly assessment and evaluation of social interaction is completed by the Project Incharge.
d. Doctor's weekly report.
e. Tutor's report regarding daily living.

22. In view of the difficulty in having a control group, the predictors which distinguish members who benefit most from agro-therapy from those members who fail to make progress or do not show the desired improvement, would be used. The emphasis would be on improving the quality of life.

23. Work in the Units will be assessed periodically on rating scales developed for the purpose based on the learning and practice of skills expected from members in different agro-based activities. Proformas have been prepared for each activity showing varying levels of performance by the members. These forms have been pretested and found suitable. The data thus collected along with periodic psychiatric evaluation and other assessments will be analysed. The project has been planned initially for a period of two years. The effectiveness of the agricultural project will be evaluated finally at the end of the period and a report will be published regarding findings which would be useful for those interested in undertaking a similar rehabilitaion programme elsewhere.


CRISIS MANAGEMENT

A STUDY OF 500 BIOGRAPHIES 1900 - 1988 COPING WITH CRISIS AS A PROCESS OF LEARNING FOR DISABLED AND NON-DISABLED ALSO IN THE FIELD OF PSYCHIATRY

ERIKA SCHUCHARDT
University of Hanover, F.R.G.


こんにちは "Koni-tzi-wa"; good morning, dear colleagues, and ありがとう "Arigato" thank you that you have given me the opportunity of sharing some reflections on "Ways towards a Comprehensive Rehabilitation" The theme of this Tokyo Congress, "Looking ahead towards Comprehensive Rehabilitation", is for me a sign of hope, since it explicitly points towards social integration and rehabilitation along the medical educational and vocational aspects of the matter.

Japan and Tokyo were brought to me in the famous autobiography of Mr.Oe Kenzaburo, the great Japanese novelist. He tells the story of his life with his disabled son, and this book was the only source from Japan I could use for my study, since it has been translated into German.

Kenzaburo Oedescribes a dialogue between himself (the Father Bird) and a friend, the friend asked:

"Imagine, Bird, that an operation takes place and the child stays alive, what will happen then? Did they not say, that no other life than one like a plant is possible? That means, that you on top of your own suffering, keep an existence alive which is of no use in this world. Do you think, this would be to the best of your child?"

Bird said:

"It would be to my best!"
Kenzaburo Oe: A Personal Experience
German ed. Fischer, Frankfurt 1972,p.136.

This is my question, too: how do we deal with the lack of this capacity? This is why I ask whether social rehabilitation is a one - way - street, a dead end. Is it possible to turn it into a mutual process of learning. Mutual process of learning means that not only the disabled persons are taught something, but also, and even more, that the non-disabled have to learn.
Which ways lead to social integration, which prevent it and end in isolation? There are a good many studies out by now on learning how to die, for example the works E. Kubler-Ross has written. But I want to answer the question: How can we learn to live when confronted by situations that seem hopeless for all affected, that seem to prevent any life beyond pure survival.

Therefore I looked for and analyzed all sorts of stories, biographical, autobiographical, fictional, that had to do with my questions. I ended up with 524 publications, written between 1900 and 1988. (See fig. I).

These are stories told by Europeans and people from other continents (see fig. II), about 100 of them from outside Europe. I studied the lives of people with the so-called classic handicaps as well as the lives of persons suffering from long-term or incurable diseases. And of course, the source material differs as to whether it was written by affected persons themselves or by people living with disabled family members, friends or clients (see fig. III).

There is also a remarkable development in regard to the writers of these stories. Till 1970, there was a two-third majority of women writing, 1975 it was about half men, half women, and in the last years, up to 1988, there are more and more joint biographies, written by men and women together.

My study came to the result that there are certain typical patterns that completely correspond to what we call learning processes in the field of education. I want to illustrate these in three sreps:

  1. The lack of the capacity to interact.
  2. Coping with crisis as a process of learning.
  3. Pearl S. Buck:"Beloved Suffering Child" - A case study in crisis management (An American autobiographer who live in China)

Because the time is limited, I only present parts of the 2. point.

2. Coping with Crisis as a Process of Learning

In the diagram (figure V, first edition published 1979) labeled "The EIght Spiral Phases of the Learning Process of Crisis Management," two main points are illustrated:

Like the process of learning in which we learn to deal with crises, a spiral can continue indefinitely. Hence our choice of this analogy. The learning process can last a whole lifetime, since real experience depends always on our lifelong readiness to learn.
Secondly, the coils of a spiral can lie flatly side by side or else e drawn asunder in a flexible manner, and this is analogous to the way in which, in the process of learning to handle a crisis, individual spiral phases can either coincide with or follow each other, and even build on one another.

To understand the process of learning to handle crisis, it will be helpful if we try for a moment to enter imaginatively into the situation of an affected person when, for example, the doctor tell her or him: 'You have cancer or Paraplegia is the normal outcome of your accident' or 'Your child is physically well but has a mental disability'. The receipt of such a message paralyzes us as if we had been struck by lightning. Unbidden the question poses itself: 'What is going on ...? 'We are in the first phase of the spiral, that of 'uncertainty'.
When the physical symptoms accumulate, however, there are unmistakable reactions from society; the number of medical diagnosis increases; entry on the second phase of the spiral is inescapable: that of 'certainty'. In this phase we try to reassure ourselves with the argument (Oh so familiar!): 'Yes ..., but it still can't be true ...?' All of us know that this 'Yes, but...'is tantamount to a straight ' No! 'But this is an exact description of our situation at the end of the INITIAL STAGE: our mind, our head, tells us 'It's true' but in our heart deep-down we feel: 'It can't be true, because it shouldn't be true!'

The biographies in question describe graphically here how the learning process in many cases came to an abrupt end at this point. Those of whom this was true needed all their strength all their lives to evade and deny the truth they found so threatening. Often it was simply because they felt themselves utterly on their own and thrown back on their own resources in their efforts to learn how to cope with their crises. They had no one to accompany them and to help them to hang on in this transit stage.

In this TRANSIT STAGE ,the intellectually understood message of the head very gradually percolates drop by drop to the emotional reaches of the heart. The consequence is that the emotions which have been bottled up almost to danger point often erupt and fly off almost uncontrollably in all directions. One can easily understand why some affected people, fearing instinctively at this point an uncontrollable outburst of emotion, erect a defensive wall against the insoluble personal problem and prefer to stand still and stagnate in the crash course of crisis management. They find it impossible to restrain the bitter cry: " Why me ,of all people ...?"

In the third phase of the spiral, that of 'aggression', the affected person hits out at everything and nothing. Any target will serve (family, friends, colleagues, society) because in actual fact the real target of his aggression is her or his disability, i.e. the crisis, and this is, of course, unassailable. In an analysis of more than 500 biographies, I found nine typical forms of aggression. I shall only mention one of these here, but this was one which was described in two thirds of the biographies analyzed. Here aggression takes the form of wishing one's child or oneself dead. The tragic aspect of this third phase of the spiral is the vicious circle of aggression from which escape seems impossible. The affected person complains: "Whyme...?" and becomes aggressive. The people closest at hand retort by asking: 'Why do you treat us so aggressively? It's not our fault!' and they meet aggression with aggression. This in turn confirms the affected person in the self-fulfilling prophecy: 'Everything, everyone is against me!' and this sets the vicious circle spinning again. Only when we learn to see that each feeling of personal injury stems from a misinterpretation of the real situation is it possible for us to break out of this vicious circle.

Parallel to this phase or building upon it, comes the fourth phase of the spiral, that of 'negotiation', with doctors, with fate, with God and the world. It may be along the lines of the question:'If...then...?' The long march through the 'world of the medical department stores' begins (the biographers report on average twenty-three consultattions!) Alternatively, we try the 'search for miraculous cures' (pilgrimages are described by two thirds of the biographers). At the end of this financial and mental shopping spree, all are inevitably in a condition of material and spiritual bankruptcy. We reach the fifth phase of the spiral, that of 'depression'. 'What for..., it's all pointless...?' Here again, the over 500 biographies illustrate two distinct and typical patterns of interpretation. On the one hand, there is grieving over what has now gone for good (health, the birth of a non-disabled child), in other words, what we call 'retrospective grief'. On the other hand, there is grieving over what will presumably have to be bidden goodbye to in the future (friends, colleagues, status), in other words, 'anticipatory grief'. Only a brief reference is possible here to the fact that an analysis of the biographies shows that two thirds of the subjects break off their learning process at this point and for the rest of their lives persist in aggression, negotiation or depression, a condition which is equivalent to social isolation.

The TARGET STAGE of the spiral will be described very briefly. Only a third of the biographers reach this sixth phase: that of 'acceptance'.'Now,I begin to realize...!'..." It is no longer a question of what has gone for good. On the contrary, it is a matter of knowing what can be achieved with what remains. For what I have is less important than what I make of what I still have.The seventh phase, that of 'activity', is the natural sequel to the sixth phase.It is now a matter of '/'//handle it...'! This phase is the root of all self-help and of all pioneering groups as well as organizations which may subsequently be formed, for it culminates in the final eighth phase of the spiral, that of 'solidarity':"We handle it together..."! I begin to look away from myself and to assume my responsibilities as part of the social and collective 'we'.

To conclude, I refer once again to the pyramidal character of the spiral, with the majority found in the initial stage and the minority in the target stage, because most of the affected - dependent only on themselves - have had to start on and persevere in this crash course of crisis management without any assistance from others.

We cannot deal here with the form taken by the process of learning in the different forms of disability described in the biographies, or with factors which exert an influence in it, or again with the key role played by aggression in particular. (*)

Because there is no time, I can't present a case study in crisis
management by Pearl S. Buck'sautobiography "Beloved Seloved Suffering Child".I
want to conclude with the quotation of the famous novel "Musashi" by E.
Yoshikawa:

"The little fish who follow the tide of the waves dance and play but who knows the soul of the ocean a hundred feet deep? Who knows its depth?"
Yoshikawa, E.: Musashi,
German ed. Droemer Munchen 1984, P. 780

(*) On this, see,

Schuchardt, Erika: Biographische Erfahrung und wissenschaftliche Theorie
Biographical Experience And Scientific Theory
The Social Integration of the Disabled, VOL. 1
Bad Heilbrunn 1st edition 1979, 3rd printing 1987
Schuchardt, Erika: Weiterbildung als Krisenverarbeitung
Further Education As Crisis Management
The Social Integration Of The Disabled, Vol. 2
Bad Heilbrunn 1st edition 1979, 3rd printing 1987
Schuchardt, Erika: Why is this Happening to Me...?
Guidance And Hope For Those Who Suffer.
Augsburger Publishing House, Minneapolis 1988.

Fig. 1

Fig. 2

Fig.3

Fig.4

Fig.5


INTERNATIONAL DEVELOPMENTS IN PSYCHIATRIC REHABILITATION

K.-A. JOCHHEIM
German Society for Rehabilitation of the Disabled Heidelberg, F.R.G.


The industrial revolution and urbanization have confronted many societies with nearly insurmountable problems especially in the management of some relevant areas of mental and emotional disablement. To avoid unbearable social and individual complications, big institutions have been widely utilized in a sort of combination of state responsibility for keeping up law and order and charity efforts for the benefit of the disabled persons. Psychiatric institutions with that purpose usually were built in rural areas away from big cities, with sometimes several thousand patients and usually long-term treatment and nursing care over one or many years with just a limited amount of therapeutic activities. The population in such institutions had been steadily increasing until around 1960.
Supported by relevant psychopharmaceutic drugs, a revolution in treatment and rehabilitation has been started around the world, hoping to eradicate chronic mental diseases and permanent impairment. Most radical was the movement in Italy, with closure of many mental institutions and transfer to ordinary hospital departments or discharge into the community.
The analysis of acute and chronic mental disorders also initiated a more accurate diagnostic classification, which produced a widely accepted consensus concerning the need to provide different types of treatment and care for mentally retarded, for drug addicts, for acute psychotic patients as well as for those with psychogeriatric problems.
Already during the twenties, more than 60 years ago, work therapy had been introduced into the custodial type of psychiatric institution with great success because reintegration into normal social life could be facilitated more easily by picking up former skills in farming, craftsmanship, or any other occupational activity. The Fountain House movement has utilized a variety of such activities, originally in New York City but also in its satellites in Pakistan and in Sweden.
The second most important step has been the development of different forms of community-based rehabilitation as a field for supported living conditions to readapt former patients to normal social relationships. The development of day hospitals to structure daily activities in preparation for later employment and the availability of sheltered and semi-sheltered employment have been important steps especially in view of restricted conditions in the general labour market since prolonged unemployment had proved to be one of the limitations for long-term therapeutic success.
Many long-term studies of schizophrenic patients have shown convincingly that the normalization of social life, including social relationships in a group or family, gainful and satisfying regular occupation, if necessary supported by well-defined drug treatment, may stabilize chronic psychiatric patients in such a way that major functions in society are regained and relapses could be considerably reduced.
Rehabilitation of mentally retarded children and young adults needs an adapted learning process with less demanding targets and a less demanding timetable, which may still lead to long-term integration into the work force, if mostly under sheltered conditions.
Rehabilitation after alcohol and drug abuse frequently requires a period of rather strict rules in order to regain a motivation for life without intoxication. Ex-users and self-help groups play an important role in later long-term social integration.
Psychogeriatric rehabilitation deals with the disabled person as well as with his or her direct environment. Training programmes for supported living conditions in the family or an adequate nursing home may provide solutions at least for a certain period of time, securing self-determination as much as possible.
International psychiatric rehabilitation shows comparable developments around the industrialized world. The big mental institutions are shrinking in size, they are frequently sectorized towards certain geographical regions in order to facilitate quick and personal contacts to the region they are serving. Quick admittance in case of need but also quick discharge to the community level is the present trend to carry on an adequate rehabilitation programme in the respective unit in the community. Services like supported living conditions, crisis intervention services, day hospitals, night hospitals, and sheltered workshops are more or less completely organized or in development, although financial support at the crossings of health, social, and employment services frequently is a matter of endless negotiations. Nevertheless, the phase of experiments has been sufficiently explored. Functioning models have been publicized and may be adapted to the local needs in many countries.
References
(1) Bocker, F., and W. Weig. Aktuelle Kernfragen in der Psychiatrie. Springer Verlag, 1988.
(2) Annual Review of Rehabilitation, Vo1. 4. Springer Publishing Company, 1985.
(3) Abstracts - IV International Congress on Rehabilitation in Psychiatry. Orebro, Sweden, 1988.


Sectoral Session E-3 Thursday, September 8 14:00-15:30

CHANGING OF ATTITUDES: SEXUALITY AND DISABLED PEOPLE

Chairperson: Dr. Emmanuel Chigier Israel Rehabilitation Society (lsrael)
Co-chairperson: Dr. Tsuguo Ohkawa Yokohama City University Hospital (Japan)

PROVISION OF SEXUAL COUNSELLING FOR DISABLED PERSONS IN ISRAEL

E. CHIGIER
Rl National Secretary for lsrael, lsrael Rehabilitation Society, Tel Aviv, lsrael


When dealing with sexuality and disability, we are dealing with a double sensitivity. It has been well documented that in most communities, non-disabled persons feel awkward or uncomfortable in the persence of a disabled persons, and rejection often occurs. This negative reaction is felt by disabled persons, producing a similar sensitivity, low self-image and difficulties or an inability in coping with social contacts and situations.

Sensitivity about sex and sexuality is equally wide-spread and (like sensitivity about disability) stems from messages received in childhood onwards, indicating that this is a special area, highly problematic and fraught with difficulties. Paradoxically, the openness about nudity and sexualy behaviour in the mass media in recent years, has often contributed to increasing the double sensitivity about sexuality and disability through the glorification of the perfect, beautiful body of a young person (Chigier, 1972).

The negative societal attitude towards sexuality and disability often extends to the sexual pertner or spouse of a disabled person who is considered as having a "psychopathological" reason for having sexual relations with a disabled person.

A third sensitivity may exist with regard to the woman who has a disability and wishes to enrich her sexual identity and enjoy sexual activities. Many communities or societies consciously or unconsciously regard women as inferior beings, who do not automatically have the same rights, including sexual rights, as men.

So the first stage in any widespread approach to dealing with sexuality and disability in Israel was awareness, i.e. making the professional and general public aware that there is a problem here, and is a need to deal with the issue.

This educational aspect of public relations was done through various conferences, newspaper, and radio interviews, and seminars for professionals.

The second stage was that of advocacy. Who is going to speak up for the sexual rights of disabled persons, to press for the development of counselling services, to persuade policy-makers that sexual counselling and therapy is an integral part of rehabilitation, to work on preventive measures through development of sex education programs for disabled adolescents and counselling for their parents. This called for an increase in public relations work, more involvement with rehabilitation services and agencies, and starting a demonstration project. Since there were no funds available for a program considered contraversial and not part of rehabilitation, a volunteer counselling program was set up by myself and functioned for four years at the Rehabilitation Center, Sheba Medical Center, Tel Hashomer near Tel Aviv. In this way, the acceptability of such a service became apparent. It became clear that such a service was useful, and that the demand was such that a twice-weekly volunteer program could not deal with the demand. So the stage was set for stage three.

Stage three was the setting up of specific services. Since 1978 a sex counselling service for Disabled Persons with a staff of 5 persons has been functioning at the Rehabilitation Center at Sheba Medical Center. For the past two years a similar service but as yet on a part-time basis has been set up at the Loewenstein Rehabilitation Hospital, North of Tel Aviv which has 300 beds.

We expect that a sex clinic at a general hospital in Haifa will begin to specialize in sexual counselling for disabled persons. Sex education for disabled adolescents has been functioning at a school in Haifa for past ten years. In the past year sex education for retarded adolescents has been developed as a series of sessions for retarded persons and their parents with the support and guidance of the Service for Retarded Persons, Ministry of Labour and Welfare. We expect expansion and consolidation of existing programs to proceed over the next five years.

We are now at the beginning of the fourth stage-that of primary sexual counselling for disabled persons. With only a few experts in the country, and a small number of centers, waiting lists have become unreasonably long and the advice of the expert a very much sought after item.

It has been recognised that in order to provide and efficient system to supply adequate services for a large mass of people, there is a need to divide health care into primary, secondary and tertiary. A large percentage of treatment and counselling for disabled persons can be handled by front line workers, psychologists, nurses, physiotherapists, occupational therapists, social workers who are already working in rehabilitation. This is provided they receive the training. Those problems that are too difficult for the primary worker to handle will then be referred to the specialist, working in the hospital clinics mentioned above who may in turn require the services of other specialists in the field of urology fertility, gynaecology, psychiatry etc. In this way, a much larger number of disabled persons can be provided with services, and the specialist can have the time and energy to devote to the more "hard-core" problems with a better possibility of success, and more opportunity for clinical research.

Recently we organised the first 30 hour-course on sexual Counselling for cancer patients and their spouses for nurses and clinical social workers working in oncology departments at hospitals around the country. This was a joint venture of the Israel Rehabilitation Society and the Israel Cancer Society which provided the funds for the course. The course was a successful one, and follow up supervisory meetings and a second course are being planned.

In October this year, a 60 hour course will be held on sexual counselling for disabled persons for rehabilitation workers in the kibbutz sector, in co-operation with the Kibbutz Rehabilitation Center - again with the emphasis on training them to be able to provide primary counselling and deal with the fairly straight-forward problems, that do not require a high level of expertise, while referring the more difficult problems for treatment at the specialized centers.

In the past two years, Tel Aviv University has included a course on sexual counselling for disabled persons, as part of continued education for psychotherapists. We hope that more and more courses will be held for primary counselling for disabled persons in the coming years. It is unfortunate that until now, it has not been possible to arrange similar courses for doctors working in family medicine, rehabilitation medicine, and various medical specialities so as to enable them to include primary sexual counselling to disabled and chronically ill persons as part of the medical treatment.

I will close this review with a short notice about two innovative developments that are now in the planning stage.

  1. Following the success of the work of surrogates in the U.S.A. working under the supervision of sex therapists, and providing sexual training for disabled persons, a course to train surrogates (male and female) is to be held in the near future in Israel. We believe that the provision of sexual therapy through the assistance of surrogates working under very carefully supervised conditions can be of major importance in the sexual rehabilitation of carefully selected disabled or chronically ill persons.
  2. In November 1990, the Israel Rehabilitation Society is organizig an International Symposium on Sexuality and Disability in Tel Aviv, in co-operation with Rehabilitation International and other national and international agencies. The symposium which will consist of plenary sessions, sectional meetings, group sessions, an audio-visual workshop, and a book exhibition will deal with a number of practical topics such as the sexual problems of persons with various disabilities, sexual education and counselling for disabled adolescents and their parents, training of sex counsellors, use of sexual aids, surgical treatment of organic impotence etc.

In summary, our experience in Israel has indicated that the development of sexual counselling services for disabled persons, at a community or national level, requres the establishment of a long-term multi-phasic program.

The phases that are most important are awareness, advocacy, provision of specialized services, and training for primary sexual counselling.

We believe that rehabilitation workers everywhere should be actively involved in working towards the provision of sexual rehabilitation, as an integral part of all rehabilitation programs with the same standing and level of professional are as that of medical, psychological, vocational

and social rehabilitation. If rehabilitation aims to provide an improvement in the quality of life of disabled persons, and not simply survival, then sexual counselling and rehabilitation is an imperative.

References.
(1) Chigier E. (1972) Sexual adjustment of the handicapped. Proceedings Twelfth World Congress of Rehabilitation International, Sydney, Australia 1. 224-227.
(2) Chigier E. (1973) Editor. Sex and the Disabled Special Issue, Israel Rehabilitation Annual 14., 89-91.
(3) Chigier E. (1980) Sexuality of Physically Disabled People. Clinics in Obst. and Gynaecology. 7. 325-343.


SEXUAL HEALTH CARE: THE NEED FOR STANDARDS

B. FIFIELD and O. FIFIELD
Department of Occupational Therapy, University of Alberta,and Fifield Consultants, Alberta, Canada


In the last two decades there has been a considerable increase in sexual health care curricula for health professionals of all disciplines, resulting in more effective sexual rehabilitation services for clients. (Conine, 1984; Daniels, 1981; Hogan,1985). Despite these improvements, surveys still show that most health professionals do not consider themselves competent to provide sexual rehabilitation, and many are unsure of their role in such services (Conine, 1984; Chigier 1981). Clients report varying degrees of satisfaction with the sexual health services received; many stating that they were not asked about their sexual concerns during rehabilitation (Brashear, 1978; Mims & Swenson, 1980; Rodocker & Bullard, 1981).
It is the our contention that if more explicit standards of professional sex education and sexual health care services were developed and implemented at all levels, the quantity and quality of services would be enhanced. The purpose of this paper is to present a model for such standards using a multi-disciplinary team approach. In addition we will discuss use of quality assurance mechanisms as a means of determining if standards are being met. In order to present standards it is first necessary to define what is meant by sexual health care, and to clarify the membership of the multi-disciplinary team who will be the providers of such care.
The World Health Organization (1975) defined sexual health as "the integration of the somatic, emotional, intellectual, and social aspects of sexual being, in ways that are positively enriching and that enhance vpersonality, communication and love" (p.6.); this definition, which provides a comprehensive view of sexual health, will be used as the basis for this discussion of standards. The multi-disciplinary team involved in sexual health care is assumed to include members of the traditional disciplines such as vnurses, physical and occupational therapists, physicians, social workers, psychologists, and others. Few hospitals, or other medical facilities, have staff whose primary roles relate directly to sexuality, such as sex therapists and counsellors, therefor such personnel are not included in this presentation. The standards we are discussing are intended to complement and expand, not replace, the primary traditional roles of the various health disciplines. Our goal is to provide such professionals with the knowledge, skills, and attitudes that will enable them to incorporate sexual aspects of health into their regular duties. When clients' needs go beyond this level they should be referred to a sex therapist or counsellor, generally outside the hospital environment. In our experience only a minority of patients in rehabilitation require this specialized level of intervention.
Much of the previously mentioned increase in sexuality curricula for health professionals has occurred through continuing or post graduate education opportunities. While this category of education is essential for the purpose of allowing practitioners to update their knowledge and skills, we believe that significant changes and developments of professional roles and areas of expertise are more likely to occur when these changes are integrated into the required basic professional education programs. Therefor the focus of this discussion will be on required professional curricula.
Professionals are prepared for their unique roles through professional education programs which normally meet the standards of their professional association or their licensing body. In addition to learning the required information and acquiring the necessary skills students take on the values and attitudes of their chosen discipline; they become members of their profession and take on ownership of the roles they are to play. In addition to theoretical and laboratory classes conducted in an academic setting, most health professional education includes a required number of clinical hours where students develop their professional skills under the supervision of practitioners of their particular profession. The academic staff and the supervising practitioners are more than mere distributors of information, they are mentors in the process of socializing students into their chosen professional roles. This process is important when looking at standards in regard to sexual health. One of the most frequent comments that we hear from practitioners about sexual health care is, "I'm not sure it is part of my role". In other words the individual has not been given a professional value that they should be involved in sexual health. We believe that there is a role for all health disciplines at a basic level of sexual health care and their professional education and socialization should include the appropriate information, skills, attitudes and values that will enable them to declare their positive values in regard to their role in such services.
The roles of the team members in sexual health may be divided into three levels: advocates, through the display of positive sexual attitudes; educators, by the provision of accurate sexual information to both clients and peers; and counsellors, through non-judgemental interactions with clients when advising on sexual lifestyle changes brought about by injury or illness. Every health professional should be required to provide the first two levels provided they have received appropriate education such as the basic sexuality curriculum module outlined here. The third level requires at least a complete course on sexuality if the service is to be effective; some professionals may choose to take this additional material following their required curriculum.
Curriculum materials are categorized several ways; for the purpose of standards they are usually described by terms such as essential, preferred, and recommended; in descriptions of academic programs they are labelled required or optional; and they are offered for credit at different levels such as diploma, undergraduate and graduate. The following outline describes essential, required curricula within the basic professional qualification program; the level of the program will be different for different disciplines and in different countries.
The following represents a 12-15 hour basic introductory module to be taught in a combination of lectures, discussion groups, and practical role playing exercises. It is recognized that many, if not all, of the topics could appropriately be added to - or may already be taught in - a variety of existing courses. However, an integrated module covering all of these topics at some level is recommended; the continuity of a separate module allows time for better integration of knowledge, development of appropriate attitudes and an increase in comfort level through value clarification. The topics are presented in a recommended sequence, but they are not necessarily of equal value or assigned equal time in the schedule; this would depend on the background and previous experiences of the students.

Suggested essential sexuality curriculum for health professionals

  1. An introduction to past and current sexual values and mores; influences of church, state, and culture; effects of one's own experiences and beliefs on professional/client relationships
  2. Sexuality language: semantics and terminology; personal and professional sexual communication
  3. Male and female reproductive anatomy & physiology; physiology of sexual response; common sexual dysfunctions
  4. Psychosexual needs & development throughout the life cycle; male and female roles; sexual abuse
  5. Sexual lifestyles and behaviours found in our society; the role of sex in relationships and families
  6. Possible effects of illness & disease on sexuality; sexually transmitted diseases; taking a brief sexual history
  7. The role of the health professional (discipline specific) as a sexual advocate, educator, and counsellor

This outline encompasses several of the concerns expressed by participants in a small pilot study we conducted at a conference on sexual health in 1986. There it was found that 84.6% of a mult-disciplinary group thought that the sexual component (if any) of their professional education had been inadequate. 88.4% believed that sexual health education should be a required, rather than optional, component of the educational programs for their discipline, and 96% indicated that the curricula, required or optional, should include value and attitude clarification as well as didactic information.
Now that we have examined possible educational minimum standards we need to address standards of clinical practice to ensure that service will be provided. Quality assurance is a three stage process in which standards for services are developed, measures of outcomes are established, and mechanisms for correcting deficits are implemented. Therefor in relation to sexual health care we require position descriptions such as those for physical therapists or nurses to include sexual advocacy and education for patients as one of their tasks. An example of outcome measures would be random examination of patient charts or through treatment statistics. If opportunities for sexual health interventions have not been offered to patients appropriate correction, such as staff discussions, staff in-services, or directives from supervisory staff should be undertaken.
This discussion has been brief, but we hope we have left you with a challenge to enquire about sexual health standards within your own clinical or educational facility and your own professional standard setting bodies. We hope you value sexual health and that you will commit yourself to those values by taking action.

1. Conine, T.A., Sexual Rehabilitation: the roles of allied health professionals, in Rehabilitation Psychology: a comprehensive textbook, Kreuger, D.W., Aspen Systems Corp., Rockville Maryland. 1984
2. Daniels, S.M., Critical issues in Sexuality and Disability, in Sexuality and Physical Disability, Bullard & Knight (Eds), C.V.Mosby Co.Toronto, 1981 3.
3. Hogan, R. Human Sexuality: a nursing perspective, Appelton-Century-Crofts, Connecticut, 1985
4. Chigier, E., Sexuality and Disability: the international perspective, in Sexuality and Physical Disability, Bullard and Knight (Eds), C.V.Mosby Co. Toronto. 1981
5. Brashear, D. Integrating Human Sexuality into rehabilitation practice. Sexuality and Disability, 1978, 1, 190-199
6. Mims,F.H. & Swenson, M. Sexuality: a nursing perspective. McGraw Hill, New York. 1980
7. Rodocker, M. & Bullard, D., Basic issues in sexual counseling of persons with physical disabilities, in Sexuality and Physical Disability. Bullard and Knight (Eds), C.V.Mosby Co. Toronto. 1981
8. World Health Organization, Education and treatment in human sexuality: the training of health professionals. 1975, WHO Tech. Report Series no. 527, 5-33
9. Fifield, B. Sex Education for Health Professionals, unpublished thesis, 1981
10. Breuss,C. & Greenberg, J., Sex Education: theory and practice. Wadsworth, Cal. 1981


MEDICAL ASSISTANCE FOR HYPOGONADISM OF MEN WITH SPINAL CORD INJURIES

KAZUOKI MIYAZAKI
Kanagawa Rehabilitation Center, Kanagawa, Japan


Men's sex function is, by nature, different from women's, the former being more nerve-dependent while the latter is rather hormone-dependent. Thus, impairment in some part of spinal cord or peripheral nerves can affect men's sex function in various ways.

As many as 30 - 40 % of the men with spinal cord injuries are actually suffering from impotentia coeundi of various degrees, even after their conditions have improved and enabled them to re-enter society. Those with impotentia erigendi are even more numerous, reaching 90 %. Therefore, in their marital life after re-entry to society, quite a few of them are worried about if they can lead sex life or if they can have their own children even though they get married to nondisabled women.

We need to understand and assist men with spinal cord injuries who are often in great anxiety about sex life. It is encouraging that a superficial concept like "Spinal cord injury necessarily results in impotentia coeudia" has been rapidly revised of late.

1. Medical Approach and Assistance for Impotentia Erigendi

The degree and level of myeloparalysis varies individually in men. (1) Among those with upper spinal cord injuries (lesions above mid-thoracic site), erection is hardly caused by mental excitation (libido), but reflectively by direct stimulation to the penis in most cases, whereas (2) among those with lower spinal cord injuries (lesions below mid-thoracic site), erection can be caused more easily by libido, direct stimulation to the penis being less effective. It is important to search for the condition of causing erection according to each person and advise him to make use of his remaining function in his sex life.

To meet the cases in which these approaches are ineffective, the following measures can be taken;

  1. Chemical prosthesis: artificial erection by injecting medicine (eg. Papaverine hydrochloride or Prostaglandin E1) into the cavernous body of the penis. A man can apply this method in his sex life by injecting medicine by himself.
  2. External penile prosthesis.
  3. Internal penile prosthesis embedded surgically.

These measures cannot substitute for all the sex function a man has lost, but partially make up for it.

2. Medical Approach for Malemmission

As 90 % of the men with spinal cord injuries are impaired in natural ejaculation, it is impossible for them to have their own children by blood without the help certain procedures. First, insemination is caused by such means as mentioned below, and the acquired sperm is carefully examined whether or not it is fertilizable. It is assumed that sperm is fertilizable as far as it contains more than 20 million spermatozoa/ml with 50 % motility rate and 20 % abnormality rate.

  1. Artificial insemination by electric stimulation (direct stimulation per rectum, percutaneous electric vibratory stimulation)

    Though these approaches are reported to have been successful overseas, they have not been in general use in Japan as yet, leaving the subject for a future study.
  2. Artificial insemination by injection of medicine (eg. Prostigmine) into subarachnoid cavity of spinal cord

    Puncture between the 4th and 5th lumbars is given to the patient lying on his side, and with consideration of the transportation of cerebrospinal fluid and the patient's physique, 0.3 - 1.0 mg of prostigmine is injected into subarachnoid cavity of spinal cord. In general, insemination is caused unconsciously in one or a few hours, together with erection. Two or more inseminations may take place with some intervals.

When side effects such as transient hypertention, headache, nausea, vomiting and borborygmus appear, they need to be dealt with immediately by use of I.V. instillation, parasympatholytic or antihypertensive agents.

With this approach, nearly 70 % of those with upper injuries (thoracic and cervical lesions) and 40 % of those with lower injuries (lumbar and cauda equina lesions) have experienced artificial insemination. In case in which the obtained sperm is less fertilizable, it might be possible to improve sperm conditions by use of male hormones, vitamins or metabolism stimulants, but the effect is not found to be marked.

3. Medical Measures for men with Spinal Cord Injuries to Have their Own Children by Blood

If the sperm acquired by the above-mentioned methods proves to be fertilizable enough, the wife's ovulation date is estimated (by measuring her basal body temperature or urinary LH hormone). Artificial insemination is carried out at the same time as her ovulation and the obtained sperm is immediately injected into the wife's uterine cervix (fertilization of sperm obtained by artificial insemination to be conducted by married couple ... A.I.H.).

We have succeeded in helping three couples to have their own children by A.I.H. by 1987. Of these, two of the wives were disabled, one with lower spinal cord injury and the other with hearing disability.

Several cases overseas and ten including ours in Japan have reportedly been succeeded in this method so far.

Future studies are expected to make further improvements in the field of medical assistance for men with sexual dysfunction due to spinal cord injuries.


BEING PHYSICALLY DISABLED - A FOCUS ON SEXUALITY

- THE MALAYSIAN EXPERIENCE -

ZALIHA OMAR, LOW W.Y.,SEBASTIAN S.,KHAIRUDDIN YUSOF
Department of Orthopaedic Surgery, Faculty of Medicine, University of Malaya, Malaysia


Human sexuality is a basic health need to be seen in the context of health and well being. It forms the basic and integral part of what we are, and not just something which we happen to have. Sexuality is built into the structure of our mental and physical processes and we cannot escape from it.

Disabled persons have often been treated differently from their able-bodied counterparts. Certain societies even suggest myths such as persons with disablities have no sexual needs or desires, others imply that disabled persons have excessive or perverted sexual needs. However, this is not true. Disabled persons, like all others are sexual human beings. They have the same needs, the same desires to love and to be loved. and much the same capacities as their able-bodied counterparts. Like any able-bodied person, they are also entitled to a satisfactory sex life, a respectable self image and the expectation of being treated like any others who have a need for emotional and sexual expression. They are becoming less content to lead lifestyle affected by the myths commonly believed by many medical personnel and others in society. Romana (1975) stated:

"The disabled woman is first a woman and second a disabled. She has desires, needs and feelings just like any other persons and has the right to express them in ways that are acceptable to her. Sexuality is composed of many things, has many ways of expressions and requires the possibilities of compromise just as other facts of life do; it offers satisfaction in giving as well as getting; and while its expression may present certain problems, these problems need not be hopeless."

Branson and Branson (1964) believe that the sexual side of life is at least as important to the disabled person as it is to the rest of mankind. Only a few of them are obliged to suppress their sexual feelings on the score of the nature of their disability. People with disabilities are beginning to demand that their sexual rights, like everyone else be met. Persons with physical disabilities often find themselves groping in the dark relating to the subject of their sexuality and reproduction. Many surveys show that with no one to turn to for help and hardly any information available, they are unable to attend to even a basic need.

Chigier (1973) outlined the sexuality rights of persons who are physically disabled as follows :

1. The right to receive information about sex.
2. The right to recieve education about sexual behaviour.
3. The right to sexually express oneself.
4. The right to marry.
5. The right to be parents.
6. The right to receive sexual health services such as family counselling, contraceptive advice, genetic counselling etc. from health professionals and the community.

It is not surprising that the sexual aspects of disability are recognised by some people, denied by others and, for others still, a matter of distaste. Such attitudes will persist until the public at large becomes more aware of disabled persons as fellow humans of equal merit and value with others. Wholeness in form and functions forms part of the sexual ideal and hence the individual with a disability can become less acceptable as a sexual being, let alone as a sexual partner. Thus, the difficulties and problems in the area of sexuality which so often arise for persons with disablities is not just created, but more so, worsened by social attitudes towards physical impairment. Attitudes towards sex and sexuality within our society are themselves so ambiguous and inhibited so as to exaccerbate sexual dysfunction in the able-bodied community, let alone the disabled one.

Far too little is known about the sexuality of the disabled persons on the level of consciousness. Attention to the concerns of persons with disablities has focussed largely on the issue of reproduction and has ignored or minimised the emotional and social consequences of various types of disabilities. This lack of attention may have derived from cultural and social attitudes that equate sexuality with youth, vigor and physical attractiveness. The limited scope and success of research in this area has also contributed to lack of involvement on the part of health-care professionals. Physicians infrequently take time to talk with patients with disabilities about their sexual concerns and sometimes react negatively to other members of the health care team who try to initiate such discussions, possibly for fear of producing additional problems and anxieties. The avoidance on the issue of sexual problems amongst the disabled patients undoubtedly reflects the lack of professional education in the area of sexuality. This fairly typical experience could also reflect an attitude of depreciating the worth and rights of the disabled persons. This in turn simultaenously imposes an arbitarary order of priorities in the line of management of the patient and in turn on that person's life; these are the priorities that place maximal value on other issues in rehabilitation such as physical independence in daily functional activities and occupational securities, and unknowingly omitting or just subtly touched on the subject of sexuality.

Within the larger framework of acute restorative and rehabilitative treatment of the physically disabled , lies the relatively ignored area of diagnosis and treatment of sexual function of this group (Cole and Rosenberg 1973). It is important to recognise that health-care professionals cannot restore the sexual health of their patients. However, they may act as catalysts in the process of helping patients to understand their sexuality and to take responsibility for their sexual needs and make sexual choices in their lives based on information and on freedom from fear and ignorance. (Cole and Cole. 1976).

Todays disabled individual is entering society more and more and because sex is such a prominent feature of community life, it will also make itself felt in the lives of the disabled person . Much discussion on the subject of "sex and the disabled" are going on in centres for the disabled , where there seems to be a need to educate the residents, as many of them lack even an elementary knowledge about sexuality. This is true for such centres in Malaysia.

Health care professionals have recently been confronted with a constantly increasing demands for sexual advice and counselling. They must address themselves to the urgent and important needs of the disabled persons for counselling and advice in sexual matters which will help the latter enhance their social integration and the rehabilitation process.

Confronted with this state of affairs, health care educators, practitioners and students have recognised the need for better understanding and greater knowledge and skills in human sexuality, especially as it relate to physical and mental disabilities, example spinal-cord injuries, cerebral palsy, cardiac diseases, diabetes mellitus, paralytic post-poliomyelities,mental retardation, learning and behavioural disabilities and other handicapping conditions. Those working within institutions such as hospitals and nursing homes have a primary influence upon the sexual adjustment of the physically disabled.

Health care professionals need to be aware of and be equipped with a clear, up-to-date and on going source of reference in this area. Unfortunately this is sadly lacking in Malaysia. A research devoted to the physically disabled persons; studying their understanding of the knowledge, attitudes and behaviours in the context of sexuality may yield information which could be directly or indirectly incorporated into training programs of medical students nurses, post-graduate trainees, other doctors , allied health professionals and other health-care-providers. Hence this research was undertaken by the authors.

RESEARCH DIRECTIONS :

  1. To gather information on the sexual knowledge, attitudes and behaviour of the physically disabled.
  2. To learn in what ways the physically disabled have problems in expressing sexuality.
  3. To learn about sexual behaviours of the physically disabled.
  4. To find out the sexuality - related service needs and concerns of the physically disabled.

With the collection of these information, the survey hope to achieve the objectives as stated below.

OBJECTIVES :

  1. The replacement of myths and misconceptions about the sexuality of the physically disabled with research-based facts.
  2. To promote knowledge and understanding of the sexual aspects of specific disabling conditions so as to enhance better treatment and total rehabilitation of the disabled person.
  3. To provide the health-care practitioner with practical information and guidelines to be utilised and integrated into clinical practice.
  4. To emphasise on sexual adjustment as one aspect in the rehabilitation and social integration process of the disabled person.

METHODOLOGY:

Identifying the physically disabled group :

A list of patients with paralytic post- poliomyelitis who have registered in the University of Malaya Medical Centre since 1968 to the date the survey was started was obtained. Persons under 15 years of age were excluded.The sampling size was 150. Due to financial constraints, only those who are residing in Kuala Lumpur, Petaling Jaya and Selangor were selected.

A self-developed questionnaire was utilised. It covered areas like sociodemographic background of the respondents, knowledge on various sexual issues such as on reproduction, contraception, masturbation, dating behaviour, attitudes toward premarital sex, marriage and number of children, sexual behaviour, source of sexual information and sexual education for the disabled persons.

Respondents were interviewed during the first section of the questionnaire, whereas for the second section, respondents were required to fill in answers by themselves, as this section dealt with personal issues. The average time taken to complete the questionaire was about 45 minutes. A pilot study was initially carried out to test the clarity and viability of the questionnaire.

Results And Discussions:

This section presents the results and discussion in the following manner: Socio-demographic profile of the respondents, Medical Aspects and Attitudes on Sexuality.

Socio-Demographic Profile of Respondents:

Age : Range
Mean
:
:
15 to 60 years
28-35 years
Sex : Male
Female
:
:
70%
30%
Marital Status : Single
Married
:
:
115 (76%)
34 (23.33%)
Education Levels : None
Primary
Secondary
Tertiary
:
:
:
:
34 (22.67%)
58 (38.67%)
49 (32.67%)
9 (6.00%)
Occupation: : Production and related workers
Service workers
Sales workers
Administrative and Managerial workers
Professional, technical and
related workers
Students
Housewives
Unemployed

Total
:
:
:
:

:
:
:
:

:
53 (35.33%)
21 (14.00%)
11 (7.33%)
8 (5.33%)

14 (9.33%)
36 (24.00%)
2 (1.33%)
5 (3.33%)

150 (100%)
Ethnicity : Malay
Chinese
Indian
Others

Total
:
:
:
:

:
64 (42.67%)
57 (38.00%)
27 (18%)
2 (1.33%)

150 (100%)
Religion : Islam
Buddhism
Hinduism
Christianity
Others

Total
:
:
:
:
:

:
68 (45.33%)
32 (21.33%)
18 (12.00%)
24 (16.00%)
8 (5.33%)

150 (100%)

The total national population of persons with paralytic post- poliomyelitis is not known, hence the distribution by age and sex may not be the true reflection of the actual situation in the country. However the proportion by ethnic group and religion of our multiracial country is fairly representative of the national figures. More than ninety percent of interviewees fall in the sexually-active age group and seventy-six percent are unmarried.

It is assuring to note that only five percent of the population interviewed are unemployed. Rural-urban migration in Malaysia in the past two decades or so in the search of employment may have had an influence on this finding.

An alarmingly big percentage had no formal education whislt those who had the benefit, did so at a lower level.

Medical Aspects:

All persons interviewed are either not immunized against poliomyelitis or did not know whether they have had or not. For the latter, no medical records about immunization are available. Most (eighty-four percent) contracted poliomyelitis before reaching the age of five years. All but one respondent are independent in functional daily activities.

Attitudes and perceptions towards Sexuality:

On the question of effect of disablity on physical self-esteem, forty-eight percent of the respondents felt that it renders them unattractive.

It is apparent that 146 (97.33%) respondents did not receive any advise on sexuality matters from medical personnel. Only 4 (2.67%) respondents did so ; two from doctors, one from a psychologist and one from a nurse. However, 135 (90%) respondents have received information and assistance from other sources. 106 (78.52%) received their information from literature, 81 (60%) from the screen ( video, television or cinema), 79(58.52%) from friends and 62 (45.92%) respondents recieved it from other disable-bodied persons. Multiple answers are permitted for this question.

On the question of importance to the disabled person of having a satisfactory sex life, 87 (58%) respondents thought it was important whilst 40 (26.67%) of them thought otherwise. Majority (76.67%) of them requested for more information on sexuality and counselling whilst 22.67% were not interested to know more. A big group(78.67%) wanted special programmes related to human sexuality whilst 20.67% thought otherwise. Of those who wanted special programmes, their preference for choice of medium seems to be medical personnel, literature, peer group discussions, school teachers, parents and family and social welfare agencies, in that order.

DISCUSSION:

The main objectives of the study were to replace myths and misconceptions about sexuality of the physically disabled, to promote knowledge and understanding of sexual aspects of specific disabling conditions; to provide and gather practical information and guidelines and to emphasise sexual adjustment as one aspect of a rehabilitation and social integration process of disabled persons. Here, the major findings are revealed together with their implications.

The findings dismiss the myths that disabled persons are sexual perverts or having no sexual needs at all. It is without doubt that sexual adjustment for persons with disabilities is a timely and valuable concept especially since current trends in human service call for normalization and total social integration. Most immediate amongst the challenges of the normalization trend is the development and implementation of sex education and counselling programmes that will promote and support equal opportunity for disabled persons for sexual expression. The study also shows that the sex drive is often suppressed and that there is no positive environment, free of fear and anxiety for the disabled person. Sex education should be a part of a broader programme e.g. "healthy lifestyle" or "preparation for adulthood". Such a programme would build on an understanding of moral values needed to provide rational basis for making decisions, developing objectives, understanding of attitude towards sex in its various manifestations and fostering an appreciation of the positive satisfactions that honest and considerate relationships can bring. The campaign is directed to those who are ignorant that sexual health cannot be separated from total health. There is a need to establish awareness and appropriate information on sexuality in the community. In this way disabled persons can learn the social skills of our complex society from the community.

The study also implies that health practitioners must first of all be comfortable with their own knowledge in sexuality before they can be helpful to others with sexual concerns.


CONCLUSION AND RECOMMENDATIONS :

The study proved that there is a strong desire among the respondents to have information on sexuality and special programmes should be tailored to their individual needs and requirements. Although all but one of the respondents were independent in their activities of daily living many appear to be rather reluctant or need encouragement for a healthy relationship with the opposite sex. It is still a taboo to talk about sex and sexuality in Malaysia's conservative society. Able-bodied persons are very often can seek help in this area from medical personnels, but persons with disabilities are reluctant to do so....... who wants to be laughed at ' as quoted by one of the respondents. Majority of the disabled persons want to discuss the subject if only others are willing to listen. Many of them even lack the most basic knowledge about reproduction, let alone other complex aspects. This survey also revealed that many disabled persons have fears and doubts about their disability and this is compounded by their inability to discuss a personal and complicated problem with another person.

The survey dismiss the myths that disabled persons are sexual perverts or have no sexual needs at all. They do need human relationships, love, warmth and sexual fulfilment just like everyone else.

According to the survey, the medical personnels are the most preferred persons to counsel on sexuality. However, in our medical centre, the doctors, nurses and other allied health personnels with the exception of psychologists and psychiatrists are not trained to do so. Hence, medical personnels and patients alike are often embarrassed to handle the 'delicate' subject.

The main recommendation from this study is to set up sexuality programmes and offer them to medical personnel, supervisors in institutions and to anybody who may be interested in helping disabled persons in the area of sexuality. Appropriate booklets to provide basic sex education for the disabled can also be printed and distributed. There is a need for the creation of educational programmes for professionals that would provide adequate knowledge and attitudinal trainings regarding sexual health and human sexuality (family life education). There is also a call for the formation of a comprehensive inter-disciplinary programme, research and service (therapy) in area of sexuality. In the local front, the Selangor and FT Family Planning Association, has started conducting talks and workshops in Family Life Education to students and those interested.

LIMITATIONS AND SUGGESTIONS :

This study largely focussed on persons with paralytic post- poliomyelitis residing in Kuala Lumpur and surroundings of Selangor. It only covered persons who were registered with the University of Malaya Medical Centre. Owing to the lack of funds, only one hundred and fifty persons were interviewed.

We would like to suggest that future research be carried out on a much larger scale which should also look into sexuality education for disabled persons, curriculum and content of programmes, attitudes to parenthood, individual perceptions and feelings and their needs in sex education and many others. Studies should incorporate other categories of disabilities like the mentally disabled, neuromotor disorders, autistic persons and others.


REFERENCES :

  1. A study of Hong Kong School Youth - Report on the Family Life Education survey. The Family Planning Association of Hong Kong, 1983.
  2. A Study of Adolescent Sexuality in Kuala Lumpur City Mimeograph (unpublished). Social Obstetrics and Gynaecology, Faculty of Medicine, University of Malaya, Low Wah Yun and others, Feb.1988.
  3. Education Research and Therapy to improve "sexual health", University of Minnesota, Programme in Human Sexuality, R.A. Chilgren, M.D. Medical School, 1972.
  4. Annals of Israel National Society For Rehabilitation of the Disabled. Dr. E. Chigier - Pub: 1 MERETZ, Tel. Aviv, P.O. Box 344.

SEXUAL EXPLOITATION AND AIDS/SIDA PREVENTION EDUCATION FOR PEOPLE WITH DISABILITIES WHICH HINDER LEARNING

BLINDNESS, DEAFNESS, LEARNING DISABILITIES AND MENTAL RETARDATION

GEORGE MARSHALL WORTHINGTON
Convenor and Chair, Working Group on AIDS, NGO Committee on UNICEF, New York, U.S.A.


There is an enormous need for sexual exploitation and SIDA/AIDS prevention education for people with disabilities simply because of the overwhelming numbers of disabled children, adolescents and adults living in the world today: 500 million by a Rehabilitation International conservative estimate. Most of these individuals have never received sex education, since until recently both institutions and families in many cultures and societies tended to be overprotective of disabiled children. However, in the past few years, a worldwide de-institutionalization trend and the movement towards independent living among disabled people themselves, so well represented at this 16th RI World Congress, have encouraged people with disabilities that hinder learning to assume more normative lives, including productive employment, educational opportunity, social and sexual relationships.

In the process of moving from sheltered situations to independent living, people with disabilities are now running an increasingly high risk of criminal victimization. Particularly affected are persons with other impairments besides a development disability like a hearing impairment or visual handicap. Their lack of knowledge about sex makes them particularly vulnerable to seduction or molestation. Their lack of information and access to services subject them to the risk of unwanted and unplanned pregnancies, sexually transmitted diseases like SIDA/AIDS, etc.

Despite the large numbers of disabled people in the world today, there is an almost total lack of reproductive health care services for these people, including services to deal with problems like AIDS/SIDA, rape and other forms of sexual violence. The reasons for this situation are numerous.

First is the fact that most people in society view disability and sexuality as opposites. The prevailing attitude toward sexuality in many cultures and societies is extremely superficial being most frequently associated with a flawless, perfectly proportioned physical exterior. Related to these widely held cultural values which equate physical attractiveness and beauty with sex and intimacy is the notion that disabled people are non-sexual and, therefore, have no need for sexual health care services of even the most basic kind--family planning or gynecological--much less services in the event that they are the victims of a sexual assault or become infected with the AIDS virus.

What is even more unfortunate here is that this misconception about the asexuality of a disabled persons is often coupled in the public mind with another misconception--namely that rape and other acts of sexual assault are "sexual acts" and not acts of violence and degredation that we have, in fact, come to know them as. Therefore, in the public mind, sexual assault services would only be needed by people who have the potential for sexual attractiveness--something never attributed to disabled people. It is a double misconception, the result of which is a dearth of services and training for professionals relevant to the needs of disabled people in these areas. Though some sexual assault services in different countries around the world have indicated a willingness to serve the needs of disabled people when querried, upon further investigation it was found that they were physically inaccessible, had no capacity to provide interpreting services for hearing impaired persons, had had no previous experience in working with mentally retarded or nonverbal people, or otherwise lacked resources or training in responses needed by disabled people.

Second is the fact that most temporarily able-bodied people often see disabled people as dependent, helpless, and child-like. This kind of thinking would logically lead to the conclusion that disabled people are also easily victimized, unable to fight back and, therefore, easy targets--especially appealing ones perhaps--for assault. Thus, the incidence of sexual assault of disabled persons in many countries is high and the services to support them through the trauma almost non-existent.

Incidents of sexual exploitation create a highly confusing situation for the disabled individual. He or she does not have the knowledge base to understand that the relative, friend or caretaker is involved in illegal and immoral activity. This confusion is compounded by the fact that the disabled individual has been socialized to comply with the requests of authority figures and that the authority figures offer affection and favors. The disabled individual often fears reporting these incidents because he or she may be blamed for the incidents or cause a disruption within the family unit.

An additional problem concerning sexual assault and people with disabilities is that many disabled people are unaware of the few community resources which can assist them. Few disabled children, adlescents or adults know what resources are available to them, or how to report a problem in order to obtain assistance. These victims do not recieve counseling, medical care or legal advocacy. Unable to protect themselves or to obtain help, they become repeated victims of rape or incest, sometimes over a period of years.

Thus, not only are disabled persons less likely to report incidents of sexual exploitation, but they are also more vulnerable to exploitive situations. Many disabled children and adults live in highly protective environments such as institutions, group homes or private homes. These persons are accustomed to obeying the directions of adults without question and because of this, they are easily victimized while in the community.

For those disabled persons who move out of sheltered settings and into unsupervised settings, the risk of exploitation increases. A recent trend encourages movement of disabled adults into independent settings where staff support is not consistently available. As the trend towards independent living increases, the need for disabled persons to exercise self protective practices becomes critical. Teachers, parents and advocates are currently providing little or no information to their disabled students and clients about sexual exploitation. While very fearful of such situations, they are very unaware of the extensive nature of this problem and lack basic knowledge concerning how disabled persons are commonly victimized by exploitation. As a result, teachers, parents and advocates/counselors are currently unprepared to educate and deal with their students/clients, and so disabled people are left extremely vulnerable and unable to inform teachers and parents about exploitive incidents.

To address this problem, for the period 1984-1986, Worthington Associates Worldwide in collaboration with Bellevue Hospital Center in New York City, conducted a special training project for rehabilitation professionals. The project had the following objectives:

-increase public awareness of the extent of sexual exploitation of disabled people, focusing on the impact of developmental disabilities on counseling, education and service programs;

-inform the disabled community that participating agencies are interested and capable of providing services to them in the event of need;

-train participants in the special counseling, communication, and accessibility needs of developmentally disabled victims of sexual exploitation;

-increase the rehabilitation profession's awareness of rape victim and prevention services, especially those which are sensitive and trained to respond to the needs of developmentally disabled individuals;

-encourage rape victim and prevention services to make sure they are integrating disabled persons into the whole range of their programs in the most effective way and to ensure that they are dealing with disabled people as employees of, as well as clients of, rape victim and prevention services;

-stimulate thinking about ways in which rape victim and prevention services, rehabilitation and other concerned organizations and individuals can work together in establishing a network of medical, psychological and legal assistance services responsive to the needs of disabled victims of sexual exploitation.

Time does not allow for a detailed discription/discussion of the 2 1/2 day training curriculum. It is to be emphasized ,however, that this is a skills training project. It is designed to provide more than just information and to change attitudes. It is designed to give participants the skills necessary to evaluate their programs and where necessary to tailor their services to the needs of disabled victims of rape and sexual assault. Additionally, it is designed to catalyze the development of a network of rape victim and prevention services and rehabilitation agencies and other concerned organizations and individuals to bring into reality a network of medical, psychological and legal assistance services sensitive and responsive to the needs of disabled victims.

The format and methodology used to achieve these training and skills objectives are varied. Examples and case material are drawn from trainees' day-to-day experience. Each of the workshops will be based upon a participative, experiential model of learning, with the trainer providin didactic materials and lectures at various points throughout each workshop. Structured exercises, role-playing and brainstorming will also be used to facilitate optimal learning in line with generally accepted adult education principles.

An important justification for the training of trainers model is that it creates a permanent local training capacity which continues to function after terinination of the training and technical assistance. Thus, it essentially "seeds" the target areas with a developmental process capable of taking its own unique direction in each community. This approach is complimented by the fact that the project proposes to use local resource people where available and resist reliance on outside professional resource persons. We believe that the "seeding" approach is especially appropriate when the goal of training is essentially to promote and facilitate local self-help aproaches to service delivery and education, as it is in this project.

In terms of specific approaches to training which will insure continuation and which will meet the unique requirements of community partnership promotion, the project has built upon several training strategies already demonstrated by Worthington Associates Worldwide. These include: 1) training across provider categories; 2) team training of participants from different agencies which share the same service area; and 3) training focused on prevention.

Drawing on the experience gained in the above project, Worthington Associates Worldwide has also begun a new project to train professional so that they can impart SIDA/AIDS prevention information to their disabled clients. This new project has been necessitated by recognition of the fact that AIDS is a new worldwide disability. Global AIDS is a disabling disease of both poverty and disadvantage. As has been noted throughout the 16th RI World Congress, the situation of disabled people throughout the world is frequently characterized by both poverty and severe economic and social disadvantage. Therefore, AIDS poses a challenge, a threat, to people with disabilities. People with disabilities are, in fact, particularly vulnerable to acquiring AIDS as they are to being victimized by sexual assault for the many reasons already identified above.

In addition, AIDS is grudgingly being recognized as a disability resulting in very real, physical, psychological/mental and visual impairments or limitations and ultimately death. As a result, rehabilitation professionals, for instance Occupational and Physical Therapists, are increasingly beginning to take their place in the spectrum of professionals who care for People with AIDS (PWAs). As a matter of fact, as the care and prognosis of People with AIDS improves, AIDS will be increasingly seen as a long-term disability. Much needs to be done, however, to fully integrate PWAs and the rehabilitation professionals who work with them into the international rehabilitation movement. Issues which will need to be increasingly addressed include stigma, discrimination and human rights, AIDS prevention in the context of primary health care and disability prevention, long-term care issues, etc. Finally, the whole field of sexuality and disability represents a body of expertise which needs to be applied to the rapidly expanding worldwide AIDS epidemic. For instance, some of the so-called safer sex strategies are similar to strategies developed to enable people with a variety of disabilities to respond sexually. Also, because of the stigma associated with other disabilities, previous work will help us address the sensitive issue of the sexuality of people with AIDS.

George Worthington is President of Worthington Associates Worldwide, fundraising and program development consulting firm. Over the last 8 years, he has specialized in family planning/primary health care and MCH/child survival for underserved areas (Africa) and populations (people with disabilities). He is also a noted training and adult education expert in the areas of health promotion and disease prevention and has received numerous awards.


Title:
16th World Congress of Rehabilitation International No.10 P.419-P.476

Publisher:
The Organizing Committee of 16th World Congress of Rehabilitation International

Month,Year of Publication:
Jun,1989

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