Tom Clonan (Independent) | Oireachtas source

Yes. I thank the Acting Chair. I am conscious of the time pressure for other Senators who wish to speak to other aspects of this care Bill. I reiterate what I said during last night's debate. The wording is, as proposed by the State on Article 42B:

The State recognises that the provision of care, by members of a family to one another by reason of the bonds that exist among them, gives to Society a support without which the common good cannot be achieved, and shall strive [this is the word that has been used] to support such provision.

I know that this is to propose the constitutional expression of a paternalistic and passive view of care as being exclusively the burden - and I use the word "burden" in inverted commas - of the family and for the majority of unpaid carers in this republic, who are women and girls. It is consistent with my direct, lived experience as a parent and a carer that the State and its agencies oftentimes have quite a hostile attitude and orientation towards carers, subjecting us to hostile scrutiny, and are at best indifferent to the care needs.

For example, in the past 20 years with my son I have not had one day's respite. Not one day. Nothing. There are thousands of families across the republic who find themselves in this position. Disabled citizens are a category of Irish citizens who are subjected to cruel, casual and routine discrimination in a way that does not apply to other protected categories of citizens. What are we being asked to do with this wording, which lacks ambition for families, carers and disabled citizens? The recommendations of the Oireachtas Joint Committee on Gender Equality and of the Citizens’ Assembly on Gender Equality was the statement that 42B also include "supports in the community". They stated it as "in the community" or "outside the home". I mentioned inflection points yesterday where there are illustrative experiences of this kind of paternalistic view of care as being the burden of the family. I am particularly struck by that formula of words, "by the bonds that exist among them".

I will refer to a conversation I had with one of the highest officeholders of the State whom I challenged on the imposition of austerity measures on disabled citizens and carers by way of cuts to their therapies, supports and surgeries. This was unlike the financial crash, which out of charity I can only assume was an unanticipated outcome and not an intended outcome of the ethical and intellectual failures of the Celtic tiger. The imposition of austerity cuts from 2010, 2011 and onwards, was a premeditated and calculated process that was and still is presented to us as a series of virtuous acts consciously inflicting harm and pain on the most vulnerable in Irish society. I have had ten years of prim economists, who are the new high priests of Ireland, espousing the virtues of inflicting austerity measures on people. I am confident they will be brought fully and completely into disrepute. That is one of the problems and one of the predictive factors in some of the issues we have around infrastructure, GP care and proper provision for vulnerable members of society. Austerity always breeds conflict. Austerity always provides fuel or oxygen to the far right.

This wording at 42B is a lost opportunity because it is not consistent with the UN Convention on the Rights of Persons with Disabilities and the rights-based aspirations contained within that convention for disabled citizens. By including care in the community and care outside the home it could have vindicated those aspirations. For the want of a few short words we now have a wording that gives constitutional expression to what I believe is a very retrograde, charity-based view of carers and caring as something that happens as it was put to me by an officeholder who was one of the highest in the land in 2011: "What you do for your son, you do it because you love him and you are to be commended." I do not want commendation, admiration or, more likely, pity. I am conscious I want the absolute fundamental human rights of my child - my adult son - and other disabled citizens and adults throughout the State to be fully vindicated and I want that expressed in the Constitution.

I am conscious that it is unlikely that any of my amendments as tabled will be accepted. I understand that is the realpolitikof this House. I share the concerns of other Senators that the manner in which this is being guillotined and the manner in which it was progressed without pre-legislative scrutiny, PLS, on Committee Stage, is not an affront to us personally as Senators but it is an affront to the Houses and to the democratic processes we must cleave to. There is a phrase "interpellation" where one accepts one's place in a discourse. I reject this discourse. I reject the use of the word "strive" and I have no confidence the word "strive" will ever come to mean anything other than it is at any point in the future. To suggest otherwise is Orwellian. It gives the State an out. It is consistent with resistance to the Disability (Miscellaneous Provisions) Bill 2023, and is consistent with resistance to the full ratification - including the optional protocol - of the UN convention. The State is trying to avoid compellability, or to provide any sort of legal framework or underpinning to the inalienable and fundamental human rights of disabled citizens - disabled children and adults.

What I want for my child and for disabled children is what everybody in this Chamber wants for every other child - freedom to live an autonomous and fulfilling self-actualised life and for the Constitution to not contain within it the assumption that disabled citizens will have a life exclusively within the boundaries of the home and with elderly parents going into crisis. It is precisely that philosophy and view - seeing disabled citizens as being somehow of less human value than other categories of citizens - that is the reason we have almost 2,000 young adults inappropriately placed in nursing homes around the greater Dublin area. It is the reason we had a child left in a room off the emergency department, ED, for two months in a completely inappropriate condition. It is also the reason we have children on waiting lists for complex spinal surgery at Children’s Health Ireland, Temple Street and Crumlin hospitals because they are disabled. It is because they are disabled and because, unlike other categories of citizen and in contradiction with the more general social contract, their is no vindication of their rights. We are the only jurisdiction where there is no obligation in law for the State, or its agents, to treat these children. This wording reinforces that, buttresses it and scaffolds it at the very nuts and bolts of our Constitution, Bunreacht na hÉireann. I, as a citizen and as a parent, reject that narrative. I reject that discourse.I know that in coming in here like yesterday and arguing on this, all I can do is make is a point, but I cannot in conscience propose that anybody would vote "Yes" for this amendment to the Constitution on that basis, because of what it does and the negative impact it has on the fundamental and inalienable rights of disabled citizens. We are being presented with a kind of a binary proposition that we get rid of the concept of the woman in the home, which represents progress, but at the expense of children like my son, like that young person who was forced to exist in a windowless room off an emergency department for two months or like another child trapped upstairs in a care facility for over a year. What other protected category of citizens would be treated in this manner in this Republic? None. We would not accept it, and quite rightly not, but by this wording we are being asked to accept that disabled citizens, their families and carers are somehow of less value than other categories of citizens in the Republic and that their rights can be curbed in the interests of others. That is not democracy. That is tyranny and I reject it.

Coming in here and making this argument, I can imagine the type of language and rhetoric that will be used to justify it. However, I will conclude on this point, just to remind Members. I have four children and when I approached the Health Services Executive to inquire what the plan was for my adult son when he entered the adult services at the age of 18, I was told there was no plan for him. I was told by the disabilities services manager that my son was at home living with me and that was the plan. I asked what would happen when I died and that manager put me on to the social worker, who asked if my son had a sister and when told he did, said she would look after him after I died. That is the thinking, the logic, and the paternalistic mindset, ideology, philosophy that underpins the constitutional expression to be found in Article 42B, as set out by the Government. That is the way it is. I am calling it as it is. I ask the House to take this opportunity to amend that wording because otherwise it is pitiful. Disabled citizens in Ireland appear before committees of these Houses repeatedly. Ireland is one of the worst places in the European Union in which to be disabled on almost every measure. We have the lowest participation rates in paid employment in the OECD; thousands of children on waiting lists for appointments that will never take place within the therapeutic window; children falling behind simply because they are disabled; and a disability Green Paper that is extraordinarily Dickensian and dystopian in its concept and design. At a time when the rights of disabled citizens are in freefall, this is the proposed wording. There is no ambition in it and I have been approached by a number of NGOs to ask if I could put my concerns on the back burner. That is interpolation. It is accepting oneself and one's status and role in a given narrative and I reject it.

I know other people are anxious to speak but I cannot express this strongly enough. This wording is such a lost opportunity and it adds insult to injury. It is a slap in the face for disabled citizens and the huge community and network of carers. I believe these proposed changes are going to fail and what a waste of an opportunity, apart from the waste of millions of taxpayers' euro. To reference the view of a former Taoiseach, after getting a slap from the electorate in a previous referendum to do with this House, why are we repeating this mistake? This is such a poorly-worded proposal. I have been in this House for almost two years and I cannot get my head around this. I do not understand why the Government would persist. Is it because senior civil servants have advised that this is a way of insulating the State against the cost or the burden of providing proper care, such as they do in other jurisdictions? That is the only cynical rationale I can think of. Surely we are better than that. Surely we can do better than that for our disabled citizens and carers.

I will rest it at that but I am very disappointed that this is what is being put forward. It is completely at variance with all of the recommendations that were given. It is at variance with everything we are hearing from the DPOs. It is just sad. This is something over which we have control. We talk about international crises and awful human suffering but this is something over which we have control and could do something about. We could put down something positive in our Constitution for disabled citizens and it does not seem to be on the Government's agency. What a pity that is. It is something we could do and what a legacy it would be to have. It is this idea that we do not have the resources to vindicate the fundamental human rights of disabled citizens. Would you say about any other category of citizens that we did not have the resources for them? No you would not, because that is the usurpation of everything in which we believe.