Government Action on Disability Policy
A Global Survey
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© Dimitris Michailakis 1997
Government Replies Question by Question
In 1993 the General Assembly of the United Nations adopted the Standard Rules on the Equalization of Opportunities for Persons with Disabilities (48/96 of 20 December 1993). The main purpose of the Standard Rules is to facilitate for Member States to adopt policies, programmes and measures in order to achieve Full Participation and Equality for Persons with disabilities. One important feature of the Standard Rules is that the United Nations should actively monitor the implementation.
In 1994 the United Nations Commission for Social Development initiated a three-year monitoring exercise to promote the implementation of the Standard Rules and to monitor the progress in the development of national policies and programmes built on these Rules.
This study has been made as part of this UN monitoring project. In co-operation with a Panel of Experts, set up as a consultative body by six major international organizations in the disability field, the Special Rapporteur, responsible for this monitoring project, selected a number of substance areas for further study. It was also decided that a set of questions should be sent both to Governments of Member States and to all national affiliates of the six international organizations, constituting the Panel of Experts. A consultant, Dr. Dimitris Michailakis, was employed for two years to conduct the study.
The consultant prepared a questionnaire in consultation with the Special Rapporteur, the Panel of Experts and representatives of the Department for Policy Coordination and Sustainable Development of the United Nations Secretariat.
The questionnaire was circulated in December 1995. When the analysis of the results was started in August 1996, 83 replies from Governments and 163 replies from national NGOs had been received. In this way information was received from totally 130 countries.
This book mainly contains a presentation of Government replies. In part I the material is presented question by question together with some observations by the author. Part II contains country profiles, built on Government replies. The presentation is made on the basis of regions, to facilitate comparison between countries.
Part III contains summaries of NGO replies. A further analysis of NGO replies together with some comparative observations between Government and NGO replies from the same country will later on be presented in separate reports.
UN Special Rapporteur on Disability
Differences in definitions, both within countries and among countries make it very difficult to estimate the number of persons with disabilities. However, according to WHO estimates, the figure of disabled people in the world is 500 million, 140 million of them being children. Among 300 million people are living in developing countries thus having rarely access to assistance, rehabilitation and appropriate services. Wars all over the world leave - amongst all the destruction - a lot of people disabled; on top of it the poverty also increases disability as a social and individual irreversible fact. In the Western world the high figures of unemployment together with great changes in the social welfare system do not facilitate - to say the least - the reduction of the impact of disability of the individual life.
With the adoption of the Standard Rules on the Equalization of Opportunities for Persons with Disabilities the international community took a decisive step towards the recognition of the human rights of persons with disabilities. The recognition of their rights started in 1975, when the UN acknowledged the need to protect the rights of persons with disabilities in the Declaration on the Rights of Disabled Persons (General Assembly resolution 3447 of 9 December 1975). In 1982 The World Programme of Action concerning Disabled Persons was adopted by the General Assembly in its resolution 37/52 of 3 December 1982. This resolution recognized the rights of persons with disabilities to equal opportunities, full participation in economic and social life and equal access to health, education and rehabilitation services. In 1982, the UN proclaimed 1983-1992 as the UN Decade of Disabled Persons. In the late eighties a proposed adoption of a draft Convention on the elimination of all forms of discrimination against disabled persons was rejected by the General Assembly. The Decade resulted in an instrument of a different kind, the UN Standard Rules constituting an international legal standard for programmes, laws and policies on disability for the future. These Rules were adopted by the General Assembly in its resolution 48/96 of 20 December 1993. Without entering an analysis in detail of the legal character of the Standard Rules the main difference between the UN Standard Rules and the proposed Convention must be observed. Unlike a Convention the Standard Rules are legally non-binding. Covenants or Conventions constitute binding international law having been ratified by Member States as also rules, that have become international customary law. The Standard Rules can attain binding character as "international customary rules, when they are applied by a great number of States with the intention of respecting a rule in international law." (The Standard Rules §14). Until then, they serve as a "strong moral and political commitment on behalf of States to take action for the equalization of opportunities." (ibid.) This decisive step - from the voluntarily action due to a moral and political commitment to becoming international customary rules - is what the monitoring is all about; to follow up, to push forward by giving good examples and pointing towards the need of more co-operation and action in order to attain the recognized goal: equal opportunities and participation. To be burdened with disadvantages, living in isolation and deemed to inactivity; confronted with the indifference of others, is not what human life is meant to be.
A global survey
In order to moving towards a more accurate assessment of the world-wide implementation of The Standard Rules on the Equalization of Opportunities for Persons with Disabilities the Special Rapporteur of the Commission for Social Development on Disability decided to make an inquiry among the Member States. The decision was taken, in consultation with the Panel of Experts, that an inquiry should be made on four of the twenty-two Standard Rules namelythe following: the Rules on Legislation, on Accessibility, on Co-ordination of Work and on Organizations of Persons with Disabilities. The inquiry should help to distinguish progress, to designate patterns where countries are approaching equalization of opportunities, thus assisting, advising and supporting countries, especially developing countries, in their implementation efforts.
The preparation of the questionnaire started in August 1995 and was completed in December 1996. The survey research method using a questionnaire to elicit information was employed, since it offers an efficient way of collecting data. Being a descriptive survey it mainly aims at analysing the findings as percentage frequency counts, presented in a tabular form. It must be emphasized that there was never the time, nor the aim, of carrying out a more thorough sociological analysis.
A questionnaire was created requesting information on Legislation (Rule 15), Accessibility (Rule 5), Organizations of Persons with Disabilities (Rule 18) and Co-ordination of Work (Rule 17) (see Annex I). In order to receive a more comprehensive picture some questions on General Policy were added. Given the variations existing between the 185 UN Member States in economic, political and cultural life, the task of making the questionnaire was rather complicated and it is hardly surprising that certain questions require a broad interpretation. The questionnaire was completed in December 1995 and sent out to all Governments of the 185 UN Member States and, in addition, to 600 national NGO's within the disability field. It was pointed out that the questionnaire specifically focuses on the implementation of the Rules, principally through legislative action, administrative rules or regulatory measures. For those given the task to answer the questionnaire it was also emphasized that the objective was to identify the official policy of the country. Identical questionnaires were sent to Governments and NGO's. Within a month the Governments and the NGO's received a reminder where - once more - the importance of their participation in this survey was underlined.
By August 1996 the questionnaire had elicited 83 responses from Governments. Answers came from Member States all over the world. A classification according to regions gives the following distribution of responses: 24 countries from Industrialized Countries, 14 countries from the Middle East and North Africa, 15 countries from Countries in Transition, 11 countries from Latin America and the Caribbean, 11 countries from Sub-Saharan Africa and 8 countries from South, East Asia and the Pacific. The responses from Governments of Member States reached 45 percent, which is a high score for such surveys within the UN system. 163 answers came from NGO's, that is, 27 percent responded to the questionnaire. The total number of countries covered by the replies from Governments in Member States and NGO's in these Member States are 126.
The results presented in this report are the outcome of the study of these replies. The very interesting idea of including the NGO's in the survey did present some new problems of comparability. Of course a comparison between the Governments and the NGO's presupposes a common unit: the country. But, from some countries there is an answer only from the Government, and from 30 countries there is no NGO reply at all; furthermore, there are also countries with more than one NGO replying but these do not always give concordant answers. A comparison requires further analysis of the data. In a coming study the views from Governments and the NGO's are going to be compared and the differences in their responses interpreted. In this study the results from the NGO's are only presented in simple frequency distributions.
In part I the country replies are summarised and are presented according to a classification in regions. This classification - common in many UN reports - has the advantage of presenting the countries in a context and not with the randomness of the alphabetical listing. Classification according to regions is not unproblematic; there are countries that do not fit easily in the common scheme (Cyprus and Malta for instance). But, the advantages are outweighing the disadvantages since countries belong to some context formed upon common history and/or level of socio-economic development and/or cultural-religious life.
Part I of this report presents and analyses the results from the Governments' replies. In order to facilitate comparisons the data are presented in tables. Each table corresponds to a question in the questionnaire (the number of the question is marked). The reader who wishes a general overview may consult only Part I. Still, analysis requires reference to the concrete cases and these could be found in Part II. Here the information is presented in a rather detailed form in order to make the answers of the responding Member States known. The preliminary results of the NGO's replies are presented in tables in Part III.
The United Nations and its specialized agencies are continually monitoring the legal status of disabled persons and the various services - education, employment, health care etc. - legislated for them. The efforts of this study largely comply with the efforts of the UN specialized agencies examining national policy, to determine the legal rights enjoyed by disabled people in different countries and to identify the problems in connection with the implementation. I hope that the data provided in this report in some way will have positive effects for persons with disabilities even if the figures are not always so positive.
Sociological research involves comparison of cases or variables which are similar in some respects and dissimilar in others. Comparability of data in this type of studies is highly problematic due to definition and other problems, which are specific for the cultural settings to which they belong. A well-known methodological problem when studying institutional and macro-social factors across different societies, is whether the units of comparison and the indicators chosen to compare differences or similarities are genuinely comparable and could legitimately be used outside their specific cultural settings. For instance, can we estimate the equality of opportunity for participation of disabled people irrespective of whether the person is living in a village in a Sub-Saharan country or in a big city in a country of Advanced Market Economies?
Comparing countries is a type of comparison particularly necessary for the UN since, on the one hand, it constitutes a unit representing the international community, on the other, is established through another kind of unit, autonomous and distinct, namely the nation-state. As an international organization the UN is concerned with world-wide issues, mainly social - the development of megacities, the situation of children, women, refugees, the disabled people - but the reality encountered is always within the context of the nation-state. Thus, the problems concerning comparison are enormous, at the same time being tremendously important to overcome. Each country has its own specific social organization, its own way of defining and solving problems.
The problem of comparability derives from the fact that the measures themselves are embedded in different structural and cultural contexts. The measures originate from the social structure and culture within which they occur. The context of the measure must therefore be taken into account before comparisons are made of the measures themselves. If the meaning of what we are comparing depends upon the context, the context must be taken into account before the comparison is made.
One way of tackling this problem is to group the countries according to regions, that is giving them a common socio-economic context, as has been argued earlier. Another is taking into account the very meaning of the concept 'disability' which differs from country to country. Not surprisingly, none of the existing classification systems and none of the definitions of who is to be classified as disabled, belonging to this or that category, provide a common framework for the different Member States. The lack of a common classification system is evident in the vague definitions of who is entitled to what services. The result thereof are great difficulties for a comparative analysis about service provision since, for instance, persons with mild disabilities in some countries are regarded as disabled, while in others as non-disabled.
In the Standard Rules the concepts of disability and handicap are defined with a different approach than that of individualising disability and presupposing a static environment. Disability has long been defined on the basis of medical factors and only more recently on the basis of social conditions. According to the first definition a person is disabled if he/she has a medically recognized condition or is unable to do anything. According to the second definition a person is disabled because he/she is discriminated against due to barriers, fear, myth or attitude. Without rejecting the medical conditions, the Standard Rules emphasize that the environment plays a decisive role in the life of persons with disabilities. Physical and socio-cultural barriers can very effectively prevent a person with a disability from living an active life. The environment is perceived not as a norm to which the person must adapt, but rather as a variable which can and should be fashioned by society to meet the demands of all persons, in variance with their needs. The point is that disability in itself does not necessarily lead to handicap, neither that similar disabilities by themselves lead to a greater handicap for a person living in a country in the Caribbean than a person living in a industrialised country. Handicap is a social science concept. It refers to the social differences between disabled and non-disabled people which are created, variable over time, within and across cultures. Handicap is affected by age, class, religion and by the geographical, economic and political environment. Therefore, the particular socio-economic and cultural or religious context cannot be ignored in determining disabled persons' opportunities for participation. The concept of handicap can then be used as an analytical tool for assessing the socio-economic situation of persons with disabilities, through reporting on rights and benefits guaranteed by law, lack of services, negative community attitudes, prejudice towards disabled persons, opportunities for independent living, transport arrangements, public media programmes etc.
The distinction between disability and handicap is important as it indicates the necessity of going beyond support to the individual - medical care, rehabilitation, support services - in order to reducing functional limitations and increasing independence. For there to be true equality of opportunity, the issues of accessibility, education, employment, minimum wage, social security etc. must be addressed. The distinction underscores the importance of legislative action in order to create an accessible environment and to take action to raising awareness in society about persons with disabilities.
Having decided to measure the prevalence of handicap, the challenge is to develop a way of capturing the hindrances depending on the social environment. There has been a tendency, in the past to concentrate almost entirely on disability indicators. The meaning of 'equalization of opportunities for participation' as explained in the Standard Rules, namely to ensure that persons with disabilities "as members of their societies, may exercise the same rights and obligations as others" draw the attention to the fact that other categories of indicators, that is, indicators helping to identify obstacles preventing persons with disabilities to participate in society are being necessary. This study collects information on social factors which have an impact on persons with disabilities and are a hindrance, or a support, for them to participate in the way of the non-disabled.
The chosen indicators aim at identifying the main social and economic factors, which constrain persons with disabilities to participate: handicap policy indicators; accessibility in physical and socio-cultural environment indicators; indicators of legislative action; indicators of co-ordinated involvement and indicators of organized action by disabled persons in interest groups. This kind of indicators, however, are subject to interpretation and are certainly not suitable (and not meant) as indicators in individual situations.
In order to increase the validity of the survey, comparability was looked for in the answers given by a Government, on the one hand, and the organization or organizations from that country, on the other. The reply from a Government gives the official view, the other is the view of an engaged part. Sometimes the official view is more coherent and more well-informed on details concerning each category of disability, sometimes the reply of an NGO is a telling example of the distance between what has been decided and what has been achieved. In this study, though, in a number of questions the answers from the Governments and NGO's are coinciding to a great extent, which could be interpreted as a verification of the accuracy of the given answers. It could also point towards a successful policy on the mentioned questions. But there are questions with significant differences, which I will analyse in a coming study.
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