1.1 People with disabilities are the neglected citizens of Ireland. On the eve of the 21st century, many of them suffer intolerable conditions because of outdated social and economic policies and unthinking public attitudes. Changes have begun to come about, influenced by international recognition that disability is a social rather than a medical issue, but many of those changes have been piecemeal. Public attitudes towards disability are still based on charity rather than on rights, and the odds are stacked against people with disabilities at almost every turn. Whether their status is looked at in terms of economics, information, education, mobility, or housing they are seen to be treated as second-class citizens.
1.2 People with disabilities are angry, and their justifiable anger was evident in submissions to the Commission and at listening meetings which the Commission held throughout the country over the past two years. The picture that emerged was one of a society which excludes people with disabilities from almost every aspect of economic, social, political and cultural life. People with disabilities and their families made it clear that they want equality, that they want to move from a reliance on charity towards establishing basic rights. They want, and are entitled to, equality and full participation as citizens.
1.3 One of the most striking features of the submissions was the sense of absolute frustration which emerged from them. The frustration did not centre, as some might expect, on personal experiences of physical pain, discomfort or impaired function. Nor did it centre on the incurable nature of many disabling conditions nor on the question of "why me", which is often discussed in relation to the distribution of disability. On the contrary, the frustration revolved around people's sense that they were being put in a position of having to deal with a myriad of oppressive social barriers in addition to their disabling conditions.
1.4 Another theme to emerge clearly from the submissions and the meetings was that of marginalisation. This word took on a stark reality and force from the hundreds of pages of submissions sent in to the Commission from people with disabilities and their families. Many people with disabilities felt that they were being either kept at, or pushed to, the margins of society. They were not being allowed to realise their potential or to participate as fully as they are entitled to in everyday life.
1.5 Disability can have major implications, not only for the individuals who are directly affected, but also for those who find themselves in the role of informal carers. While it is almost always close family members - parents, spouses, or children - who fill this role, friends or neighbours may also be involved in a
Major way. The Commission received 100 submissions from the family members of people with a disability. This material was also full of strong feelings and emotion and underlined the point that caring for people with disabilities can be an ongoing physical, mental and emotional strain accompanied by a sense of terrible isolation.
1.6 In practical terms, one of the single largest areas of concern raised in the submissions and at the listening meetings was the question of access and transport. Clearly, the built environment and most forms of transport are very inaccessible for people with disabilities. Many of the submissions from individuals referred to the inability to get out and about, the need to plan every trip and the sense of being "a prisoner in one's own home". They criticised the inaccessibility of public transport: as one person put it graphically, "public transport means that when you are disabled you are no longer a member of the public". These problems are not just mechanical ones but ones that have several important consequences. They mean that people are denied full access to education, to employment and training, to cultural and leisure events. They mean that the overall cost of living for people with disabilities is higher than for other people.
1.7 Another of the major failings identified at the listening meetings was the lack of information available to people with disabilities and their carers. And not just the absence of information but the way in which people were treated when they went looking for it. The difficulty of obtaining access to entitlements and services, both public and private, was of major concern. Many submissions emphasised the lack of co-ordination between service providers, the fragmentation of services and the difficulty in getting entitlements. There is no one source of information for people with disabilities and they frequently have to go from organisation to organisation in an attempt to identify their options. The absence of easily accessible information is clearly a major factor in the isolation and marginalisation experienced by very many citizens.
1.8 There was serious concern too about education: a failure to provide comprehensive education for people with disabilities results in their being denied access to employment and training opportunities comparable to those available to people without disabilities. Other areas which attracted a large number of comments in the submissions included employment and training, income support, health and personal support. In addition, many complaints were received from people about the length of waiting lists for services.
1.9 All that said, people with disabilities are not without hope. This hope does not
Centre on finding a "cure" for disabling conditions, but on the possibility of improving their quality of life through changes in existing attitudes and improvements in services which will, together, allow them to develop their own potential. As one submission put it: "It is our earnest wish that people with disabilities will be given their rightful place in society, the opportunity to participate and to contribute fully in all areas of Irish life."
1.10 The Commission on the Status of People with Disabilities wants to see that hope become a reality and has wide-ranging, even radical, proposals to make it happen. For example, it recommends that a Disability Support Service will be established with resource centres all over Ireland, providing information, advice, advocacy, and practical support to people with disabilities and their families from the minute they need it, either from the ante-natal stage or whenever the need arises later in life. It proposes the establishment of a National Disability Authority, charged with overseeing the implementation of new laws aimed at improving the lives of people with disabilities, and coordinating everyone's efforts to do this. It proposes that new ways of thinking about people with disabilities, underpinned by laws and supported by practical measures, will spell an end to the discrimination and exclusion that is their experience now.
1.11 Perhaps one of the most telling indications of the neglect of people with disabilities is the silence of relevant official statistics. Unlike most European Union countries, there are no comprehensive statistics available for Ireland. The opportunity to determine accurate figures was missed again in the 1996 census of population: it should not be lost in future censuses. In addition, the Commission repeatedly came up against an absence of information about people with disabilities in relation to a wide range of issues.
1.12 The Commission itself was not in a position to conduct or commission a major survey of the population because of the complexity of the task, the resources and time it would require and because of its own deadlines. However, it asked the Economic and Social Research Institute to assist it by collating existing quantitative data on disability to help it arrive at some overall estimates. (See Appendix A for a full discussion of the numbers.)
1.13 On the basis of that and reports from other EU countries, the Commission concluded that some 360,000 Irish people, or 10% of the population, have a disability. This number is a conservative estimate and compares, for instance, to 12.5% of the populations across most EU countries.
1.14 Disability is not present in equal proportions among all age groups, tending for obvious reasons to be more common among older people. Recent surveys in Northern Ireland estimated, for instance, that 17.4% of the adult population there have disabilities compared to 3.5% of the child population. Our own estimates suggest that half of all people with disabilities in the Republic are aged 60 and over. When the families of those with disabilities are included - and the Commission specifically included families of people with disabilities in its considerations - a large and significant proportion of the population is clearly affected by disability. There are few families who have not been, are not, or will not be, affected by disability to some extent or other at some time in their lives.
1.15 Pending the next census of population, the Central Statistics Office should carry out a survey of the extent of disabilities in Ireland and establish a system to ensure that relevant data is regularly updated. This survey should be undertaken in the early part of 1997 and updated bi-annually thereafter. All agencies responsible for the monitoring or quality control of services should also ensure that adequate management statistics are collected as a matter of course.
1.16 In drawing up a strategic Irish policy on disability for the first time, it is important to look at the context of change. Attitudes towards disability have changed considerably over the past 15 years, led by a stronger and more vocal movement of people with disabilities throughout the world. The United Nations International Year of Disabled People in 1981 marked a watershed in thinking and led to the World Programme of Action concerning Disabled People adopted by the UN in 1982. In essence, this international movement has changed the approach towards disability. Rather than being seen as a "personal" or "medical" problem which was the result of an individual's physiological, anatomical or psychological impairment and caused by disease, accidents or other "personal tragedies", it is now seen as a "social" problem whereby disability is caused by society's failure to adapt itself to the different ways in which those with disabilities accomplish activities.
1.17 Three key principles have informed recent international legislation and practice:
- The recognition that disability is a social rather than a medical issue.
- The adoption of a civil rights perspective, and
- The recognition of equality as a key principle of the human rights approach.
1.18 These principles have come together in the United Nations' Standard Rules on the Equalisation of Opportunities for Persons with Disabilities which were adopted in 1993 in consultation with organisations representing people with disabilities. The Rules while not legally binding on UN member states do reflect current thinking about disability policy and are intended to provide the basic international legal standard for programmes, laws and policy on disability in the coming years. They are aimed at ensuring that all people with disabilities can exercise the same rights and obligations as other people. To do they set out a list of preconditions for equal participation, including awareness raising, support services, and specific targets for equal participation, including access to the physical environment, access to information and communications, public transport, education, employment, income maintenance, family life, culture, recreation and sports and religion. They also set out specific implementation measures and monitoring mechanism.
1.19 The Commission sees the UN Standard Rules as being a key document in the future development of disability policy and many of the recommendations in this report are aimed at implementing them. It welcomes the change of emphasis away from a medical approach to disability towards a more social approach, especially when a medical or diagnostic approach ignored the imperfections and deficiencies of surrounding society. A given level of impairment or degree of restriction does not necessarily lead to disadvantage: it is the societal response (in terms of attitudes and expectations as well as the services and facilities made available) which has an important impact on the extent to which impairment or disability lead to disadvantage. The impairment may be caused by physical, mental, intellectual, emotional or sensory factors. The fact, for example, that many public buildings are inaccessible to people with mobility impairment is not something which is caused by the impairment. It is perfectly possible to construct buildings which are readily accessible to people who use wheelchairs or have other types of mobility impairment. Inaccessible buildings are caused by society's decision, whether informed or uninformed, to build structures in such a way that they will not be accessible to some people.
1.20 After various stops and starts over the years, the Irish disability movement restarted again towards the end of the UN Decade of Disabled Persons (19811990). As the European movement of disabled people grew, more Irish people with disabilities became aware of it and wanted to be a part of it. This led to the establishment and growth of organisations controlled (Le. With over 51% of their membership) by people with disabilities.
1.21 The core message of politically active groups such as the Forum of People with Disabilities, the Centre for Independent Living and the Advocacy Ireland Movement was and continues to be heard both by the media and by policy makers.
1.22 At the European Non-Governmental Organisation (NGO) level members of various Irish NGOs have contributed at the highest level to the many debates that take place on disability issues. One of the highlights for the Irish disability movement was the impact made by the Irish representatives at the first European Disabled People's Parliament held in Brussels in 1993 and co-chaired by an Irish person. Of the 60 speakers who contributed to the debate that day
14 were Irish, and 34 Irish delegates were among the attendance of 500 people with disabilities.
1.23 The recommendations in this report must also be seen against the background of overall developments in Ireland, in particular the development of measures which recognise the importance of equality and equity. Included in those are measures to deal with poverty as well as efforts to improve the delivery of services to people who need them.
1.24 The Commission welcomes and strongly supports the establishment of a representative Council for the Status of People with Disabilities. It recognises the need to allow the Council to establish itself and to develop its own priorities and ways of working and believes that it will fulfil a central role in lobbying for the implementation of the Commission's recommendations. The Commission recommends that the Department of Equality and Law Reform should provide ongoing core funding at a level appropriate to the importance of the task facing the Council and which takes account of the additional costs which arise in respect of disability, for example, sign language interpreters, brailling, transport and so on. We wish the Council and all its members every success in their work.
1.25 The establishment of the Department of Equality and Law Reform is a significant indicator of the Government's recognition of the importance of equality. This is also recognised in the "Equal Participation" section of the Programme for Government - A Government of Renewal - which states that the Government regards "the work of the Commission for the Status of People with a Disability as being fundamentally important" and commits the Government to taking "specific action to end discrimination and to ensure equal opportunity for participation by all our people in Irish life".
1.26 In particular, the Government has committed itself to introduce a Disabilities Act "to set out the rights of persons with a disability, together with the means of redress for those whose rights are denied". The Government will also "put in place mechanisms for full and equal participation by every citizen with a disability in every aspect of our economic and social life".
1.27 The importance of equality has also been emphasised in a report from the National Economic and Social Forum on Equality Proofing Issues which found that people with disabilities are discriminated against in terms of rights and opportunities which other people take for granted. The Commission strongly endorses the NESF recommendations on "equality proofing" as it refers to people with disabilities. The Commission believes that there is an urgent need for the Government to adopt a policy of "disability proofing" legislation and any public policy initiatives. It recommends that the Minister for Equality and Law Reform should bring proposals to Government within six months aimed at securing agreement to adopting a policy of "disability proofing".
1.28 Given the connection between poverty and disability, the Government's commitment to draw up a National Anti-Poverty Strategy to address all aspects of poverty and social exclusion is also relevant. Under the Strategy, all government departments and state agencies will be expected to include the reduction and prevention of poverty as key objectives in the development and implementation of their policies and programmes. They will also be required to consult and involve people affected by poverty in this process. As a person with a disability stated: "if you are poor you are likely to be disabled, and if you are disabled you are likely to be poor." Disability is a cause of poverty and social exclusion and it is important that specific measures to respond to the needs of people with disabilities are included in the Anti-Poverty Strategy.
1.29 The Programme for Competitiveness and Work, published in February 1994 contains an important commitment to people with disabilities where it states that: "The report of the recently-established Commission on the Status of People with Disabilities will be considered in consultation with the social partners with a view to effecting a real advance in the position of people with disabilities in all aspects of life".
1.30 One of the most important facts about the Commission itself is that almost two-thirds of its members are people with disabilities or are carers of, or members of families of, people with disabilities. In their meetings and deliberations over the last three years, they have learned a lot about disability, the many forms it can take and the many hardships that can be imposed on those affected. Those members who have been previously involved in other disability groups readily admit that they, too, have learned a lot. All these experiences underline the Commission's approach to its task and its findings.
1.31 The Commission decided a number of issues early on and adopted guiding principles for its work. Among the issues decided was to use the term "people with disabilities" rather than terms which have been used in the past such as "the disabled" or "the handicapped". It does so in order to emphasise the point that people with disabilities are people first and foremost.
1.32 For the purpose of its work, the Commission understood the term "people with disabilities" to include children and adults who experience any restriction in their capacity to participate in economic, social or cultural life on account of a physical, sensory, learning, mental health or emotional impairment.
1.33 It also decided that it should make recommendations for all people with disabilities rather than attempt to divide them up according to types of disability. In doing so, the Commission fully recognises the specific needs of particular groups but is seeking to address the common sense of exclusion experienced by all people with disabilities. The Commission was also particularly mindful of doubly disadvantaged groups, such as women, children or Travellers with disabilities. It was also conscious of the fact that there is inequality and discrimination between groups of people with disabilities, some of whom for reasons of numbers or history are able to exert greater influence than others. For this reason, too, the Commission has adopted the approach of making recommendations as relevant as possible to all people with disabilities.
1.34 The three guiding principles adopted by the Commission to inform its work were:
- Maximising Participation
- Enabling Independence and Choice
1.35 The key principle, the principle which underlies all the recommendations in this report, is the principle of equality. People with disabilities must be recognised and treated as having equal status with all other citizens. The State should provide for programmes of affirmative action and positive discrimination to address the past inequalities experienced by people with disabilities. Equal status can only be achieved if the rights of people with disabilities are upheld.
1.36 It is important to explain what we mean by equality. There are many ways in which equality can be understood, ranging from formal legal equality, to equality of opportunities, to equality of status at all levels of Irish life. Formal legal equality would simply ensure that all existing formal discrimination against people with disabilities was removed. This is obviously a precondition for equality but it is only a beginning.
1.37 There must also be equality of opportunity so that people with disabilities can participate in education, employment, and all other walks of life on an equal basis. This could involve measures to encourage people with disabilities to participate in education, sport, or cultural activities, or disability and equality training for people working in public services. But equality of opportunity would still not ensure equality of status.
1.38 To ensure that people with disabilities have equal status and are widely represented at all levels of Irish life will require affirmative action. Government must take the lead in this but every other sector of Irish life, including local authorities, churches, public bodies, employers, trade union and sectoral organisations, non-governmental, voluntary and community organisations and individuals must recognise that the existing exclusion of people with disabilities from so many aspects of Irish life impoverishes all of us. Examples of affirmative action, or positive discrimination, could include training policies to develop senior management skills among employees with disabilities, or university access programmes for students with disabilities to enable them to participate on equal terms in the university system.
1.39 The second principle - maximising participation - means that people with disabilities have the right to participate in all areas of Irish life to the fullest extent possible, and that individually and collectively (and where appropriate, their families and friends) they have the right to influence decisions which affect their lives. It also means that in the course of all policy making, the State should have regard to the needs and interests of people with disabilities.
1.40 The third principle - enabling independence and choice - means that people with disabilities have the right to be able to achieve their full potential. They have the right to make their own decisions and choices regarding the conditions of life best suited to their circumstances. They also have the right to quality services which meet their needs at all stages of life and they must not be dependent on charity or voluntary effort.
1.41 The State must acknowledge its responsibility to ensure equality of status. In particular, it must assume special responsibility for marginal or vulnerable groups of people with disabilities, and support them, their families and friends to the extent that they cannot do so for themselves.
1.42 The Commission proposes a wide range of measures to ensure that people with disabilities become full participants in society, independent and, above all, equal. It puts forward a detailed plan for the overall structures required to achieve that aim as well as specific recommendations on all aspects of life. When implemented, these recommendations will transform the lives of very many people.
1.43 Recommendations on overall government policy and new structures for state services are outlined in detail in the next section of this report along with costings for all the Commission's proposals. The following section, Part 3, addresses the economic issues raised by disability while Part 4 deals with specific areas of social and civil rights for people with disabilities. Part 5 covers the issues affecting those people with disabilities who are particularly vulnerable and Part 6 covers research. The Appendices include further details about specific aspects raised in the body of the report.
1.44 Arising from its work, the Commission concluded that there are a number of issues on which it is necessary to have minimum ethical standards, based on respect for human dignity and a safeguarding of individual rights, particularly in the areas of medicine, biology, biotechnology, law and administration. The Commission did not consider that such matters came properly within its terms of reference. It recommends that the Government should take appropriate steps to have such matters addressed at an early date.
1.45 Throughout this report, the Commission's intention is that where people with disabilities are mentioned, this will include parents and families of people with disabilities when appropriate.
1.46 This is an ambitious report which, when the recommendations are implemented, should change the world for many people with disabilities, including their families and carers. That is no less than people with disabilities deserve and what they, as equal citizens of this state, are entitled to as of right.