DEVELOPMENTAL ARTICLES

GLOBAL TRENDS IN DISABILITY ISSUES: A SOUTH PACIFIC PERSPECTIVE

Penny Price*, Laisani Radio and Jo Toga

ABSTRACT

The United Nations International Year of Disabled Persons, in 1981, marked the beginning of a decade of serious attention to issues of disablement by the global community. This has been consolidated in the 1990s, with disability clearly placed on the United Nations social agenda, along with other minority group equity issues such as ethnicity, gender and poverty. However, progress had been slow in the Asia-Pacific Region, with change in attitudes and awareness not translating into action. This paper reviews the global trends in disability issues over the last decade and a half, focusing on a South Pacific perspective.

GLOBAL TRENDS

The United Nations International Year of Disabled Persons, in 1981, marked the beginning of a decade of serious attention to issues of disablement by the global community. This has been consolidated in the 1990s, with disability clearly placed on the United Nations social agenda, along with other minority group equity issues such as ethnicity, gender and poverty.

There has been a major shift in the philosophical value system underpinning disability initiatives, from a viewpoint which locates disability within the individual and focuses on the need for amelioration or rehabilitation, to a human rights framework which perceives individuals with disabilities as persons with rights and opportunities equal to those of non-disabled members of their communities. The onus is on society to accept diversity in its members, and to make the institutional changes necessary to achieve this outcome for disabled citizens ( 1, 2).

The World Programme of Action concerning Disabled Persons, declared in 1982, was followed in 1983 by the Decade of Disabled Persons. The objectives, to be achieved by 1992, included giving disability specific expression to human rights instruments, removal of social and physical barriers that limit participation in society, and the achievement of equalisation of opportunities for, and full participation of, persons with disabilities. Prevention and rehabilitation of disability were incorporated in a global framework for action. Also held in 1983 was the International Labour Organisation (ILO) Vocational Rehabilitation and Employment Convention on Disabled Persons, promoting equal training and employment opportunities.

A mid-term review of the Decade of Action revealed that progress had been slow in the Asia-Pacific Region, with change in attitudes and awareness not translating into action. It was determined that there was a need for a guiding philosophy to indicate priorities for action, and that the basis for action should be the recognition of rights of persons with disabilities. The first statement of rights, the Convention of the Rights of the Child, which was passed in 1989, is legally binding and requires signatories to review and modify national legislation. In relation to the rights of children with disabilities it protects rights to life, to support, to special needs education, rehabilitation, employment and recreation, and the fullest possible integration and individual development. In 1994 three other significant initiatives were taken, that were designed to guide action into the next century. The first of these was the United Nations Standard Rules on the Equalisation of Opportunities for Persons with Disabilities. This international instrument was designed to guide and facilitate change to achieve human rights, so that persons with disabilities may exercise the same rights and obligations as others in society. It provides a framework for policy making and legislation, action, and the basis for technical and economic co-operation, in 22 sectors of societal endeavour. These include awareness raising, support services, accessibility, education, employment, family life and personal integrity, culture, organisations of persons with disabilities and national monitoring and evaluation of disability programmes in the implementation of the Rules. The emphasis is on the State removing obstacles which prevent full participation, and although the Rules are not binding they imply strong moral and political commitment on behalf of states to take action for the equalisation of opportunities for persons with disabilities (3).

Focusing on education, the Salamanca Statement and Framework for Action on Special Needs Education was declared at a UNESCO World Conference on Special Needs Education: Access and Quality, held in Spain in (4). Evidence suggested that 100 million children in the world are denied access to primary education, and that the same number again fail to derive benefit from attending; that less than one per cent of the world's disabled children attend school in developing countries, and that in nearly half the developing countries the goal of universal primary education is receding (5). The Salamanca Statement proclaimed the necessity for Government commitment to the 'Education of All Children', in inclusive systems of education which cater for the special needs of children with disabilities.

The third additional initiative was a joint collaborative interagency document sponsored by the International Labour Organisation, the United Nations Scientific and Cultural Organisation and the World Health Organisation. The position paper put forward a model of community based rehabilitation (CBR) as a realistic means of meeting the needs, and promoting the rights, opportunities and social integration, of persons with disabilities within their communities, as a strategy within community development. As a broad concept, CBR is recognised as a comprehensive approach which encompasses disability prevention and rehabilitation in primary health care activities, integration of disabled children in local schools, social integration into full community participation and the provision of opportunities for gainful economic activities for disabled adults. It has the capacity to reach the majority of the population, both those living in urban areas and people living in remote, isolated and rural communities.

In 1992 a long-term strategy was developed to implement the World Programme of Action concerning Disabled Persons to the year 2000 and Beyond. The initiative was entitled 'Towards A Society for All'. The aim was to promote the human rights, equal opportunity, independence and self-determination of people with disabilities, with an onus on society to accommodate itself to their differences, not the other way around. The focus is changed from disabilities to abilities, differences must be taken into account at the planning stage, society must become fully accessible, and diversity must be accepted with tolerance, basic support services provided, and rehabilitation made available to all in need. The core element is a series of National Plans, supported by regional and global activities. These include activities to disseminate the Standard Rules, the Salamanca Document on Inclusive Education and the CBR initiative. The approach is much more structured than was the case with the 1983 World Programme of action. The aim is to set achievable goals, which will be monitored to maximise desired outcomes, such as the strengthening of national co-ordinating committees, and of organisations of disabled persons, integrating disability issues into national policies, setting standards, mobilising resources such as families and communities, building local capacity, and evaluating progress.

In the Asian and Pacific region the 1992 World Programme of Action concerning Disabled Persons to the year 2000 and Beyond has been translated into a very specific regional strategy. The Economic and Social Commission for Asia and the Pacific (ESCAP) proclaimed the period 1993 to 2002 as the Asian and Pacific Decade of Disabled Persons, and further adopted the proclamation on the Full Participation and Equality of People with Disabilities in the Asian and Pacific Region, and the Agenda for Action for the Asian and Pacific Decade of Disabled Persons (6). ESCAP has formulated Mandates for Action which cover the major policy categories under which efforts will be required from participating countries. These include national co-ordination, legislation, information, public awareness, accessibility and communication, education, training and employment, prevention of causes of disabilities, rehabilitation services, assistive devices, self-help organisations and regional co-operation. (7). Annual regional meetings are held to monitor progress, most recently in Seoul, South Korea, in September 1997.

The Asian and Pacific region consists of 56 countries, diverse in size, development, population, culture and political systems. They include industrial giants such as Japan and South Korea, densely populated countries like China, India, and Indonesia. The countries which will be considered in this report have little in common with their densely populated north-western neighbours, apart from very general geographic location They are eight small South Pacific island nations - Fiji, Solomon Islands, Tuvalu, Kiribati, Tonga, Western Samoa, Vanuatu and the Cook Islands.

A SOUTH PACIFIC PERSPECTIVE

The area generally referred to as the South Pacific consists of twenty two island nations, spread across an area of thirty million square kilometres of Pacific Ocean. Of the 7500 islands only 500 are inhabited, with a total population of 6.5 million and an annual population growth rate of 2.6% (8). Countries range from tiny, overcrowded coral atolls to large mountainous land masses. Pacific life is still primarily rural in nature, with 75-80% of the population living in isolated villages and outer island communities, although urban drift is increasing in the more developed countries, like Fiji. Countries belong to one of three culturally distinct groups - Melanesia (Fiji, Solomon Ilsands, Vanuatu), Polynesia (Cook Islands, Western Samoa, Tuvalu and Tonga), and Micronesia (Kiribati). All of the countries have obtained independence from colonial domination within the last 30 years.

At the regional organisation level disability has not featured on the agendas of the South Pacific Forum or the South Pacific Commission. Regional disability initiatives have tended to be introduced by United Nations (ESCAP, WHO) and donor agencies (AusAID). In 1988 an AusAID funded Regional Disability Planning Workshop was held in Suva, attended by Tonga, Cook Islands and Western Samoa. In 1991 WHO conducted a CBR Training Workshop attended by all the countries listed above. ESCAP has conducted several workshops, focusing on strengthening organisations of disabled persons, access issues and the development of assistive devices. Donor agencies from many countries are active in the South Pacific and volunteers have been placed in many small scale disability related projects, but there has been limited support for large scale or regional projects, with the exception of the AusAID South Pacific Childhood Disabilities Project (9).

Primary catalysts for disability service development have been non-government organisations (NGOs), both international, national and local. UNICEF has tended to focus on developments in generic Early Childhood Education but has recently indicated an interest in disability issues Save the Children Fund (UK) has worked for a decade in Fiji, developing screening and identification procedures for young disabled children, and more recently in establishing CBR services, both in Fiji and the Solomon Islands. Following the 1981 International Year of Disabled Person,s the Red Cross was actively involved in establishing small centres for children with disabilities in the Solomon Islands, Kiribati, Tuvalu, Tonga and Vanuatu. In the Cook Islands and Western Samoa local NGOs were formed, as they had been in Fiji, where services had been developing since the late 1960s, with AusAID funding a trained teacher. The result in Fiji was the development of separate special schools for children with vision, hearing and physical disabilities. Each was run by an independent local NGO, with little co-operation or co-ordination. Expanded services such as an early intervention centre and a vocational training centre, which cater for children and young adults with a broad cross-section of disabilities, have been frustrated in their growth by management and ownership problems stemming from a single disability umbrella organisation. This pattern has persisted in Fiji, and is evident in Western Samoa and Tonga. Advocacy to Government has been hampered by lack of a coherent and co-ordinated NGO voice.

South Pacific Governments have been slow to accept responsibility for disabled citizens. The typical pattern of development has been for services to be developed by the NGO sector, and for them to gradually persuade Government to become involved. This has been easier to achieve in some countries than others, and is very much an issue for disability advocates in the region in the late 1990s. As services have been provided, disabled people have become more visible in the community, and public awareness about disability issues has risen. At the same time international initiatives have been targeting Government members, and so gradual progress has occurred. Progress is driven very much by local factors. Some anomalous situations exist. Fiji, Tonga, Kiribati, Tuvalu and the Solomon Islands are signatories to the UN Convention on the Rights of the Child, but have no legislation mandating education for all children, whereas such legislation has been passed in the Cook Islands and, more recently, in Western Samoa, who have not yet signed the UN Convention.

Fiji is the only country with a National Council of Disabled Persons, established as a Government statutory body in 1993. In the Solomon Islands there is co-ordination among NGOs, including the S.I. Disabled Persons' Association, who meet regularly and are consulted by Government on issues affecting disabled persons. In Western Samoa the various local NGOs have been attempting to form a co-ordinated body, to advocate to Government on disability issues, and this movement has been given momentum by the appointment of a National Disability Co-ordinator who started work in January 1998. This volunteer is funded by New Zealand Overseas Development Aid, and her primary task is to achieve the formation of a National Council for disabled persons. In the Cook Islands there is close collaboration between the major disability NGO and Government Ministries, but no formal organisation. In Tonga, Kiribati, Tuvalu and Vanuatu approaches to Government are ad hoc, disability is a low priority issue, and a strong, effective advocacy base is needed to alter this situation.

The Fiji National Council is in the final stages of completing a grass-roots information gathering process which will result in a National Disability Policy and Action Plan in mid-1998. Under a joint National Council and Institute of Justice and Applied Legal Studies project, Ministries are currently reviewing all legislation with a view to law reform. The new Constitution Amendment Act 1997 was passed, and contains a Bill of Rights, which ensures that persons with disabilities will be included under anti-discrimination provisions. The Bill of Rights also declares the right to access in all public amenities, and the right to a basic education and to equal access to educational institutions. Twenty three Fijian Statutes have been identified that may need revision for effective law reform to be completed (10). This is a very advanced position and will provide a model for Fiji's Pacific neighbours. In 1990, after a review of their education system, the Cook Islands adopted a policy of 'Education for All Children' from the age of 3 to 15 years - including children with disabilities (11). Work on a National Disability Policy has been on-going for some years. Western Samoa has recently enacted legislation on an 'Education for All' Policy, but there has as yet been no implementation.

Information on incidence of disability in the region is limited, and the United Nations' estimate of 6 - 10% is often accepted as guideline. Limited surveys have been undertaken in the Cook Islands' southern group islands, in Western Samoa and on Malaita in the Solomon Islands, in 1989 and 1991 (12, 13, 14). Incidence figures indicated 3.5%, 2.5% and 3.2% respectively. Disability workers in the countries surveyed have suggested that these figures are an under-estimate, and detailed work conducted in the southern group Cook Islands in 1994 revealed an average of 5.6%, rising to 12% if all the children with learning difficulties in regular schools were included (15, 16). Fiji is in the process of re-designing the data base within the Ministry of Health, to enable disability statistics to be identified, and the National Council is working towards a system of national disability census information. This is not on the agenda in any of the other countries under discussion.

Increased public awareness was one of the successful outcomes of the first Decade of Disabled Persons. The development of services, even though on a small scale and not initially endorsed by Government, has led to increased visibility of disabled people within their communities, and local NGOs have been encouraged to seek publicity for their activities, and to participate in the community celebrations and activities. In Kiribati, in 1996, a band formed by students with visual impairments at the Centre for Persons with Disabilities was one of three groups invited to perform at the official function to celebrate the country's 16th anniversary of independence. The Fiji Disabled Persons' Association (FDPA) has sponsored a Disability Awareness Week since the early 1990's. In the Cook Islands a disabled contestant won the Miss Cook Island Young Beauty Queen competition in 1994. Ignorance and prejudice are still evident, but being replaced by acceptance and tolerance, and in Fiji, with strong advocacy and action from the National Council, disabled people are increasingly viewed as citizens with rights.

Accessibility has been the focus of ESCAP workshops held in Fiji on several occasions. It is an area where advocacy has come from the FDPA and the National Council, but all the Pacific countries lack basic accessibility for people with disabilities, both in their urban and village environments. Until Government commitment is achieved national standards will not be set, and significant progress made. This was strikingly illustrated in the Solomon Islands when Government provided office accommodation that was not wheelchair accessible for NGO agencies which included the S.I. Disabled Persons Association (17).

Reference has been made to the early establishment of separate special schools for different types of disability in Fiji, Western Samoa and Tonga. In Kiribati, Tuvalu, Vanuatu, and the Solomon Islands, small centres were established by the Red Cross, and these have not achieved the status of schools, although efforts to achieve recognition, funding support and scholarships for teacher training have been successful in the Solomon Islands and Tuvalu, and are currently being pursued in Kiribati. The Centre in Vanuatu closed down when disability provision changed to an exclusively community based model in 1993. In the Cook Islands services were not established until the 1980s and developments followed a more integrated model, with close NGO-Government co-ordination. The Centre for Disabled Persons established an early intervention programme for mothers and infants, and pre-school aged children, and later classes for school aged children were established in a Special Needs Unit within one of the regular primary schools, and funded by the Ministry of Education. The Ministry of Home Affairs and Community Development contributed to the running costs of the centre. There are children with disabilities attending regular pre-schools and schools, with some support provided from the staff at the Special Unit. A recent initiative has seen a link with the Wellington College of Education, New Zealand to establish a Special Education Teacher In-service Project, targeting teachers in regular schools, and providing them to teach children with special needs in an inclusive setting (18). This is a very advanced step. The programme will eventually be taken over by the local Teacher Training College. In Fiji the Ministry of Education pays teacher salaries in special schools, there is some limited integration but with no formal support services, and a small private school has been established for children with learning disabilities, as has occurred in Western Samoa as well. Increased attention to special needs in regular and special schools has prompted the placement of a Lecturer in Special Education at the primary Teacher Training College in Fiji, and from 1997 a Diploma in Special Education will be offered at the University of the South Pacific. A South Pacific Disability Caregivers Training Programme Certificate Course has been offered through Extension Services since 1996. These capacity building initiatives will impact on all the countries in the region. Informal links between NGO special schools and centres and local teacher Training Colleges have taken place in Western Samoa and in Kiribati.

Fiji has a Rehabilitation Vocational Training Centre in Suva but it is not providing a national programme, and does not have an effective policy and links with open employment. This is an issue being addressed by the National Council. One NGO in Western Samoa has developed an effective craft training programme for older disabled students. In the Cook Islands and in Kiribati programmes are run for young adults but staff lack skills for community living and employment training. In Tonga adults are maintained in an institutional setting. This is an area of need in most countries.

Prevention of causes of disability should be included in generic health services and in WHO or United Nations Population Fund activities, but while Fiji and the Solomon Islands have trained health workers to identify young children with disabilities in the first years of life, specialised knowledge is not available to most community health nurses in Kiribati, Tuvalu, Western Samoa, Tonga and Vanuatu. Dr Katoanga, UNFPA Adviser on Maternal Child Health and Family Planning for the South Pacific Region, has further commented on the problems that arise when identification of disabilities is made in a context where there is no adequate advice or service to families (19). Early intervention services are not widespread, and centre-based services such as those that exist in Suva, and attached to the Red Cross Centre in Honiara, or in Rarotonga in the Cook Islands, are inadequate to meet the needs of families throughout the countries. Indications are that disability is increasing rather than declining, in spite of the fact that many of the most common causes are preventable. This, too, is an area in need of urgent initiatives.

Rehabilitation services have traditionally been based in hospitals or centres, in Fiji, Western Samoa, Solomon Islands, Tonga and the Cook Islands. Professional therapists are in short supply, and out reach staff to facilitate reintegration into local community living is beyond the reach of Pacific health budgets. The need for widespread community based services is evident in all the countries under consideration, if disabled people in outer urban, rural, isolated and outer island communities are to be included in measures to ensure their rights to equal opportunities. CBR programmes and processes have been implemented in Vanuatu, Fiji, Solomon Islands and the Cook Islands. In Vanuatu, centre based services were closed, and replaced with district CBR services. In Fiji the CBR programme was initiated by Save the Children Fund (UK), and after protracted negotiations with Government, was finally successful in having the programme taken over by the Ministry of Health. The service was targeted at children, and did not reach all districts of Fiji. The Fiji Disabled Persons Association has had some involvement in community services for adults, and the National Council is now looking at a national strategy which would be implemented with the training assistance of WHO. The Solomon Islands CBR strategy was planned jointly from its inception with the Ministry of Health and the NGO sector. Training began in 1994 and the programme has resulted in community development and assistance to people with disabilities in rural areas. The limited initiatives in the southern group Cook Islands were also jointly Government and NGO sponsored. The need for CBR in Tuvalu, Kiribati, Tonga and Western Samoa has been acknowledged, with Western Samoa currently considering the most appropriate path to take to achieve this objective.

Assistive devices have traditionally been imported into Pacific countries, available to the fortunate few while many have had to do without. A prosthetics and orthotics laboratory was established in Fiji in the late 1980's, and its integration into the Ministry of Health is currently under consideration. Imported wheelchairs frequently fail to stand up to the harsh village conditions, and some attempts have been made to design them for local conditions. Locally made educational toys have been used in many of the small Red Cross and local NGO centres in Fiji.

Reference has been made to the Solomon Islands and Fiji Disabled Persons Associations, which comprise disabled persons as executives, and represent disabled persons' interests in their countries. They are affiliated to Disabled Persons International, which was formed in 1981. In the Solomon Islands they are acknowledged, but not financially supported by Government, but have an informal voice on issues affecting disabled people. In Fiji they have a representative on the National Council, and so play a formal role in policy decisions. Recent developments in the Fiji Disabled Persons Association have seen the beginning of a number of significant initiatives. One of these is the Pathfinders Youth Group Organisation, formed to provide challenging social, educational and recreational activities for youths aged 15 - 25 years. This is a very neglected group, with limited vocational opportunities (20). A second initiative is the 'Celebration 2000' four year programme, committed to raising awareness about issues affecting disabled persons, focusing particularly on employment, housing, access, education, transport, health and recreation. This will be achieved by a variety of means, including closer links with the Fiji National Council for Disabled Persons (10).

Encouraging the development of self-help organisations is one of the mandates for action in the ESCAP Asia and Pacific Decade of Disabled Persons. An ESCAP funded workshop was held in Fiji in June 1997, as the first step in the 'Celebration 2000' programme. The workshop was attended by 28 full time participants and was considered to be the first real attempt by people with disabilities in Fiji to voice their own concerns. Attempts have been made to facilitate the establishment of an Association of Disabled Persons in Western Samoa, with assistance from New Zealand aid, but have not yet been successful. This is an area of expected and necessary growth during the remainder of the decade, in harmony with the prevailing global philosophy which emphasises the rights of disabled people to self-determination, participation, obligation, rights and equal opportunities in their communities and societies.

Regional co-operation is an area with potential for the more developed countries to assist their less developed regional neighbours. The primary issue is to establish disability on the South Pacific Forum and South Pacific Commission Agendas. This will occur as more countries take the step recently achieved by Fiji, with a Government mandated statutory National Council on Disability. The potential to impact on policy, legislation, services and rights increases exponentially when Government is represented on the Council, and it is not a game of cat and mouse between Government and NGO, a description which fairly aptly describes the negotiations recently taking place in Kiribati and Western Samoa, as they seek recognition for the role of their schools, and funding support towards teacher salaries. The other powerful regional organisation is the University of the South Pacific, as member countries benefit from the training offered to build local capacity to meet disability needs in their own countries. The Certificate course in Disability Studies, offered by the University Extension as part of Continuing Education, has been particularly significant. The course has students from six Pacific countries, primarily but not exclusively, disability caregivers in a wide range of settings. In association with the course a regional Pacific Network of Disability Workers has been formed, publishing a quarterly newsletter, and planning a regional project to build disability support groups, expand resources, and provide a rotational specialist to further promote and enhance disability initiatives in all participating countries (21)

Regional NGOs also have a role to play. These include donor agencies active in the region. Professional disability organisations have been slow to offer support to developing regions, but there is an international trend for increasing contact and involvement. The South Pacific Disability Council, formed by the Intellectually Handicapped Society of New Zealand, continues to play a training and support role to small NGO agencies involved in disability work in the countries under discussion. The Pacific Island Council for the Blind provided some useful regional training before its activities were terminated due to administrative problems. Administrative training is as necessary as is the need for professional training in the disability area. The United Blind Persons of Fiji is however still active, in strong association with the Fiji Disabled Persons Association.

Early growth in disability services and initiatives was unplanned, ad hoc, and dependent upon whoever happened to have interest and commitment, and be in a position or place where they could impact on disability needs. The most significant change that is taking place as we move out of the late 1990s into the next momentous decade is the serious commitment to action that is evident in agencies such as ESCAP, The UN Special Rapporteur and Panel of Experts on the Standard Rules, and other agencies. The difference between the 1983-1992 Decade of Disabled Persons and World Programme of Action, and the 1993-2002 Long Term Strategy to Implement the World Programme of Action, lies in the blue print provided in the ESCAP Mandates for Action. Using the headings listed above, the Mandate spells out in simple language and very clear terms exactly what needs to be done to achieve the objectives. This has been used by the Fiji National Council for Disabled Persons to move Fiji from a country with limited Government commitment to disability issues, to one which is in the process of enshrining their rights in the Constitution. Western Samoa has recently signed the Proclamation committing the Government to the pursuit of the ESCAP Mandates, and the matter is currently under consideration by the Cook Island Government. The task is to reach the countries who have not yet signed the ESCAP Decade Proclamation, and to involve their Governments in the process. In many cases failure to act on disability stems from ignorance rather than negative determination, as became evident in many advocacy discussions with ministry officials as part of the AusAID South Pacific Childhood Disabilities Project (9). The officials in question had limited knowledge of disability and needed assistance to formulate policy and implement services needed to provide the disabled citizens of the South Pacific region with equal opportunities and rights to those of their non-disabled brothers and sisters.

The ESCAP initiatives have the capacity to banish ignorance in the South Pacific - and beyond - in the twenty first century! The most pressing task is to draw non-participating countries in to participate in the ESCAP vision, and to provide the necessary support to help each country meet the clearly defined mandates which will serve the rights and needs of people with disabilities in these countries.

*Macquarie University, Sydney, NSW 2109, Australia

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