Michael D Higgins (Galway West, Labour)

Using this as an illustration of this narrow construction, the term "enduring" will create immense difficulties for other forms of disability. If one had rights for having a disability, one would demonstrate it and it would be evaluated and accepted. The decisions as to whether it will be an enduring disability is an example of the difficulty associated with definitions based on premises that do not consider rights. When the Disability Legislation Consultative Group issued its report in February 2003, it entitled it Equal Citizens. It had spotted that if the problem lies with the society that places difficulties in the way of those who are disabled, then it is the society that should change, rather than it seeing the imperfections of the person, which is a defining purpose of this legislation.

We debated this issue long before the Disability Bill 2001. It has been debated since 1993. The Commission on the Status of People with a Disability was established in November 1993, with Mr. Justice Flood as its chairperson. It produced 402 recommendations, the ninth of which called for a disabilities Act to be introduced to set out the rights of people with disabilities and provide a means of redress for those whose rights are denied. The report recommended that the Act should outlaw all discrimination against people with disabilities and should require public and private bodies, employers and educators, to make reasonable accommodation to meet their needs. The sheer thrust of this is to accept the citizenship basis of the rights that are involved. Having acknowledged a rights-based legislation, no one asked that provision be made for it overnight but that only the acceptance of the burden of responsibility of inclusiveness by the State.

Regarding the debate so far, I am fascinated by the arguments for designing a society in which through access no impediments would exist for the disabled. Opposition Members have received correspondence from the Design Institute, pointing out that it was not consulted on the wider issue of designing buildings and an environment in which those with disabilities would not be impeded. It is not only about them being impaired or the removal of obstacles, it is about facilitating the fundamental principle of inclusiveness.

There is an interesting example of what might happen with the legislation in future. Recently I listened to a report from the Minister for Finance claiming the costs of the debacle of taking moneys from vulnerable patients in nursing homes might have to be met by cuts in the education budget. This is waving a threatening stick, saying that if demands for rights-based legislation go too far, funding will be taken from others more needy. Immediately this exposes the absence of the acceptance of the principle of right-based legislation. The Minister of State is as familiar as I am with the extraordinary convolutions of people who assess and then handle the appeal process. Take the following scenario. After a liaison officer has prepared an assessment claim, one may wish to bring an appeal through the system proposed in the Bill. First, the liaison officer, or as many as the chief executive may decide, will offer his or her opinion on the case to the chief executive. The liaison officer, who enjoys his or her position at the whim and bid of the chief executive officer, is involved in an assessment that is neither free nor independent. It does not satisfy the basic principle of seeking another opinion. The necessary distance between the original opinion and the revised opinion does not exist. In any event, there is no question of changing the original assessment unless the circumstances of the individual involved are drastically altered. It is a representation of what we know already to be a less than satisfactory appeals process.

I would be glad to be corrected, if I am wrong, about my argument concerning epilepsy, but I can think of other examples. The term "enduring" and the concept of permanent disability is a nonsense when referring to those who have suffered strokes or are recovering from them. All one knows is what one needs at the time. One cannot say if one is permanently disabled or otherwise. There is an issue of accessing evaluations. The appeals mechanism is flawed. Section 19 is reminiscent of section 47 of the previous Bill, and is a nod at abolishing what would have been the full function of a judicial review in the courts. In section 19, it was decided that an appeal could not be frustrated on a point of law. It states "an appeal to a court shall not lie against a determination of the appeals officer other than an appeal on a point of law to the High Court". The substantive matter, therefore, cannot be brought to court. One loses that right regarding the full statement in the court at the price of what is accepted in the Bill. It behoves us as legislators to look precisely at what is on offer in the Bill.

I have sympathy for the Government on several points. I was a Cabinet member between 1993 and 1997. I shared a building with the former Minister for Equality and Law Reform, Mr. Mervyn Taylor. I know the difficulty one has in any Cabinet when introducing rights-based legislation. I also know of those with the permanent opinion within the Department of Finance who say over their dead bodies will they allow the principle of an open-ended system as suggested by rights-based legislation. Instead, they will only allow the introduction of what they consider to be an appropriate system that we can pretend is practicable. Draw the conclusion from where all that brings one — it is the defined availability of resources to the relevant Departments by the Department of Finance, which is defining the extent of the service available to those in need. The need is no longer associated radically with the person or reforms of the society; it is associated with what one can pay for.

If one looks at the United Nations convention and what is going on in the draft convention there, it has taken an entirely different role. If one looks at the proceedings in the Commission and in the European Union, the European Union's definition of disability is a social one and it is quite wide. In the language it uses, it speaks of full participation and inclusion. The language in this Bill is at the other end of the spectrum; it is in terms of medical definition. We can argue on Committee Stage as to precisely how narrow that medical definition is and I am as open as anybody to be corrected on any part of it.

It would always have been difficult in any Cabinet to carry through rights based legislation, but it would have been the right thing to do. It would have been the genuine road down which to go if one was talking about some kind of principle of equality in a constitutional sense. I know it is not for me but for others to decide whether this Bill is consistent with the Employment Equality and the Equal Status Acts if asked that constitutional question. Certainly, there are matters on which those who have been gifted by the Constitution with the right to require such opinion by the Supreme Court might well seek it. They would be wise to do so because, frankly, the definition of equality in the two Acts referred to is not the definition, as I detect it, in this Bill.

There is also the incredible practical difficulty. Many Deputies who made good speeches, including those on the Government side, spoke about the nightmare experiences of those with disability in dealing with such fundamentals as basic housing provision. It is an absolute nightmare and it is coming down with forms that must be filled in. Some disabled people would almost wish themselves dead because of the amount of time it takes to come to terms with the dramatic change in a person's life when he or she can no longer climb a stairs. I will give an example with which I dealt recently. In a city development the plan required that one could not build an extension unless one left so much free space — that is, free space which the houses never had — so if one demolished the coal shed and half the kitchen, one would meet the requirement and the stairs was too narrow for a stair lift and so on. All of this convoluted nonsense is there and yet this is what we will see again as we make our way from liaison officers to assessment to appeals officers and so on. Not one of them will be able to change the fundamental decision and, under section 19, those involved have no recourse to the courts except on a point of law. No doubt we will come back to the definition of a point of law in section 19 on Committee Stage.

What I was speaking about in relation to housing was the importance of mainstream housing. I am not imputing anything to Members on the Government side; I am simply saying there is a fundamental difference between us. I have welcomed what the Minister for Finance said in his budget speech, the real commitment he has given and the multi-annual structure but I cannot say this is rights based legislation. It is nothing of the kind. It falls short on all the fundamental principles I have mentioned, that is, in terms of definition, the right of independent appeal, the absence of commitment to progressivity, which might be made a matter for review, the whole nature of inclusiveness, mainstreaming through housing and in terms of what it leaves the citizen.

I wish to dispose of one point a previous speaker mentioned, that there were many in the disability sector, across all the organisations, who accepted the principle that with all the rights based legislation, we would be giving the money to lawyers. That is a terrible suggestion. Quite frankly, there are some wonderful people working on rights based legislation here, in Europe and in the United Nations, including my colleague, Professor Gerard Quinn. I have heard it before. It is the failure of the State to treat every child equally that has required children's rights to be vindicated by the Supreme Court through their parents who have had to drag the needs of their children through the courts with the State, including different Governments, often resisting until the last minute. That was an abuse of the legal system.

What those of us who have been advocating a rights based system have been arguing for is not to place an impossible burden on the State but simply for the State to take the responsibility to show why needs are not being met rather than for the parents of the person who is disabled or the child in need to vindicate their right. Something very good might come of this as more and more Deputies and Members of the Seanad debate this Bill. I hope the Government, before Committee Stage, comes to accept — it would be a very good day for these Houses — the theory of citizenship which generates rights for which we may not have the money this year or next year but within four or five years. That is what would define equality for us. That is the direction in which the Equal Status and the Employment Equality Acts were going and that in which the rights commissioners in Northern Ireland and here and the United Nations were going. It is also most implicit in the language of the European Union. That is the road we should choose.

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