I thank the Chairman for the high honour of addressing the committee. We have provided a lengthy submission and a much shorter written statement, but I do not propose to dwell on these, as they can be digested at leisure. It would be a much better use of the committee's time if I were to speak more directly on the draft heads of the Bill, since the committee will likely have to frame its report in these terms. Before doing so, I remind the committee that the delay in enacting this legislation - and indeed the delay in ratifying the UN Convention on the Rights of Persons with Disabilities - has a lot to do with the need to ensure the Bill is in the closest possible alignment with the convention, especially Article 12 thereof. This caution is laudable, but the clear implication is that the only test for the heads of the Bill is its alignment with the convention and particularly the aforementioned article. It seems plain to me that three things must be achieved in the heads of the Bill: it must be consistent with the philosophy and spirit of Article 12 and indeed other parts of the convention; it must map effectively onto Irish law all the core requirements of Article 12; and, just as important, it must provide a stable platform for organic growth into the future. We do not want to be back here in five or ten years' time. Of particular concern to me in that regard is whether an essentially positive philosophy of support can find a stable home in an essentially negative superstructure premised on a deficit approach and with guardianship as a form of protection. I will return to this later.
At the risk of getting sidetracked, let me dwell on the issue of protection in passing. I am not one of those who say that all protection is bad or all protective measures are necessarily tainted with outdated paternalism. My own view is that the self-evident need to protect some citizens with intellectual disabilities does not necessarily lead to stripping them of the right to make decisions for themselves. There are more effective ways of protecting people than removing their decision-making capacity. If protection is a concern, I would advise that we focus on it, especially on the development of adult protection programmes. We should not pursue it on the cheap by removing a key indicia of personhood, the right to make decisions for one's self.
Let me return to the three key tests for the heads of the Bill, its philosophy, whether it maps the requirements of Article 12 onto Irish law, and whether it allows sufficient space for development and growth in the future. With regard to the philosophy of the Bill, many if not all of the previous witnesses have emphasised supports, and I add my voice to theirs. Much more importantly, in our submission and more directly in our written statement, we pointed to the views of authoritative bodies in the international legal order to the same effect. There has been a certain crystallisation of views on this in the last few years, certainly since 2006 and even since 2009. These bodies include the Office of the United Nations High Commissioner for Human Rights, the Council of Europe Commissioner for Human Rights, of which we are privileged to have a representative at the committee today, the inter-American treaty monitoring body, which handles the relevant disability convention in the Americas and, more relevant to Ireland, the UN Committee on the Rights of Persons with Disabilities. Ireland will account to this latter body when we ratify the convention. The committee has already emphasised that a lack of tangible steps away from guardianship and towards a support regime will attract negative criticism. I assume Ireland does not want to expose itself unnecessarily to such criticism or to international legal liability. I will move on since, in the interests of time, the committee members can read the opinions of these bodies for themselves.
I will make the following points with regard to the philosophy of Article 12 and whether or how the heads of the Bill accord with it. First, as Amnesty International pointed out previously, the title of the Bill is wrong. There should also be a wall of separation between mental capacity - really, mental capability - and legal capacity. In terms of legal capacity, one's inherent right and virtue of personhood to both hold and exercise rights remains a constant. One's mental capacity may vary, and indeed it does in all of us, but I suggest one's mental capability bears no direct causal relationship with either one's status as a person or one's legal capacity. Even if one were tempted to link the two and therefore conflate them, this runs directly counter to modern clinical psychology on decision making, which, if anything, downplays the role of cognition as the key driving force in most of our decisions, whether big or small. Consistent with the philosophy of the convention, the title needs to be changed to refer simply to legal capacity. This is not a cosmetic change. Behind it should be a very clear wall of separation between mental capability and legal capacity.
Second, as currently drafted, head 1(a) allows for a removal of legal capacity in that it assumes legal capacity unless the contrary is established. Given that there are alternative protective mechanisms available, I suggest that this language must go. Third, head 1(f) is to the effect that due regard is to be had to the dignity, bodily integrity, autonomy, etc., of the person. Why bury this? Why not elevate it as a key cornerstone of the heads and, in doing so, remove the equivocation? The words “due regard” should be removed and the provision altered to specify that the dignity and autonomy of the person are to be respected at all times. Fourth, head 1(e) uses American civil rights language, to which I am generally naturally attracted, referring to least restrictive intrusions and so on. I very much respect the sentiment, but I feel this language is completely out of place. Flipped over, it concedes intrusions into legal capacity and regularises them by assuring us that no over-broad intrusions will be allowed. Since we should have legal capacity as a constant, there is no need for this language.
Fifth, the definition of capacity in head 2 needs to be changed. Unpacked, it is really a definition of mental capacity, not legal capacity. It builds on an inarticulate assumption that a lack of mental capacity automatically amounts to, or can be easily framed as, a lack of legal capacity. I say we should break that link. It may be that some statutory language on decision-making capability is needed, but only, I would advise, to build on a positive picture of the kinds of support required to enable people to exercise their legal capacity.
Like Amnesty Ireland and others, I am extremely wary of the term "best interest" in head 3. Decoded, the signal it sends is that others can make decisions so long as the decision can be rationalised with regard to some objective criterion of what is truly in a person's best interest. I make bad decisions all the time. In fact, I probably made one or two this morning. In decisions that are not generally in my best interest, why do I enjoy the dignity of a wide margin of risk but not others?
What about the core requirements of Article 12? What is not in the heads and should be is important. Here we arrive at the key normative absence from the head. It is an effective treatment of the concept of the support. Some might say I am wrong and that head 1(c) provides that a person is not to be regarded as lacking capacity unless all practical steps have been taken to support him or her, with no success, yet I hold to my point. Head 1(c) does not, in so many words, set out either a philosophy or a right to support. Inasmuch as it broaches a positive support philosophy, it does so against the backdrop of a negative - the removal of capacity. Instinctively, I do not like this elliptical way of framing an idea in legislative language. There is a similarly elliptical provision in the English Act and the experience there is that it has not provided a stable foundation for the evolution of a support regime. The support idea is just an ingredient in a decision about capacity. I again say break that link and put support on its own platform and in its own Part in the heads of the Bill. That would valorise the positive philosophy.
Article 12 does not talk about supported decision-making, rather it talks in much deeper and broader terms about support to enable people to exercise their legal capacity. Let me lay to rest one popular misconception. To me, support does not mean a new programme, a new bureaucracy, a new army of service providers or a new means-tested entitlement scheme. It is the opposite. President Higgins recently spoke about the need to get as far away as possible from the language of needs, supports and services. I totally agree with him. Support in this instance really means reconnecting people to the web of social supports in their communities, which is precisely what eludes people with intellectual disabilities.
Ireland is a leader in moving people away from congregated settings. With the help of circles of support in the community, groups such as Genio and Áiseanna Tacaíochta are blazing a trail. The committee should build on the obvious and make the recommendation that the Minister do likewise. If legislation is needed, it should acknowledge this naturally occurring web of social supports and circles in the community, allow the expression of the will and preference of the person that bubble up through these circles of support to have legal standing and require third parties to respect them. This has been done in British Columbia and there is no reason we cannot do it.
Part 2 establishes an office of public guardian, essentially to hold the many personal guardians to account. It would be much better to create an office of public support, the core task of which should be to spell out what support means, how tensions - there will be many - can be managed and how safeguards can be achieved. Let me be frank. There is a standing danger that supports will oust the will and preference of the person concerned, even unintentionally. Very difficult lines will have to be drawn, but the difficultly in drawing these lines should not stop us innovating.
Head 20 makes absolutely no sense to me. It purports to exempt swathes of decision-making powers. I do not use the language of violation of international law lightly. I do so sparingly. However, if there is a clear violation of Article 12 in the heads, this is it. Article 12.2 talks about the right to enjoy legal capacity in all spheres of life. Would it not be much better to reverse the lexical ordering to require that a previously existing statute to the contrary should be interpreted in a way that brings it into maximum alignment with the heads? If it is not possible to interpret it thus, it should be deemed null and void. After all, the normal statutory construction allows a subsequent statute to take precedence over a previous one. I suggest this should be better reflected in the heads of the Bill.
With respect to the third test of the heads of the Bill, whether it will provide a stable platform into the future, I am concerned that a negative platform built on deficits, albeit with the very best intention of providing protection, although I say the issue of protection can be handled otherwise, is not a reliable support platform. I think it was Oliver Wendell Holmes who said the law was the external deposit of our community's moral sensibility. This is a timely reminder that law reform is too important to be left to lawyers because it rests, ultimately, on the moral sensibilities of the community and because the world community has decisively moved to the support paradigm. As others have said, we again have a unique opportunity in Ireland to set standards in the field of disability. It is in this spirit that I commend the move to the support paradigm and hope my observations on the draft heads of the Bill put that in a concrete form.
