Tom Clonan (Independent) | Oireachtas source

I ask for the Minister’s forbearance as I intend to speak to the Fortieth Amendment of the Constitution (Care) Bill 2023. Ironically, the reason I am asking for the Minister's forbearance in this regard is that I have a caring commitment myself this evening.I will not be able to be present later to discuss it in the slot allocated to it. I will look at the record for his response.

The proposed care amendment is a lost opportunity. It is not consistent with the recommendations of the Joint Committee on Gender Equality, chaired by our former colleague Deputy Bacik, leader of the Labour Party. Neither is it consistent with the wording recommended by the citizens' assembly chaired by Dr. Catherine Day. I am puzzled and surprised to hear, as has been said here, that she has been involved in the launch of a "Yes" campaign. I think this is a lost opportunity. Article 42B is what is called a new care article in the explanatory notes. The proposed wording states: "The State recognises that the provision of care, by members of a family to one another" [listen to this] "by reason of the bonds that exist among them." I address that specifically to the Minister. It "gives to society a support without which the common good cannot be achieved, and shall strive to support such provision". The use of the word "strive" renders this care provision meaningless because strive can be challenged. I know, and the Minister knows from his conversations with me, that families cannot get the supports for independent living that they need. The answer we are given is that the State is striving to do so, but it is beyond its capabilities or, in my belief, beyond its ideological willingness to do so.

I will propose an amendment tomorrow but I am dismayed to note that no amendments will be entertained, especially given the timeframe, because it will not be practically possible to do so. My proposed wording is that the State shall take reasonable measures to support care within families and the wider community and shall promote and protect the rights of people with disabilities to live independently and enjoy full inclusion and participation in the community. That participation in the community was part of the proposed wording set out by the citizens' assembly. The Oireachtas joint committee put in its wording as a proposed part of this amendment stated, "outside of the home". The wording as it stands flies in the face of the aspirations for independence and autonomy - the right to independence and autonomy for disabled citizens as set out in Article 19 of the UN Convention on the Rights of Persons with Disabilities. This wording falls pitifully short of that.

I tell the Minister what it is. I have had a couple of inflection points in my life as a carer. I will give a couple of examples. One was when my son progressed from pediatric care to adult services. This was in 2019. I contacted the disability services manager in our CHO, where we live, to find out what the plan now was for my adult son. The disability services manager told me that there was no plan for him, and asked was he not living at home with me. That is the paternalistic, patronising, patriarchal view of care as expressed in this wording; care exists exclusively, and is reified, in the context of the home. Families will look after each other because of those bonds that exist between family members. The disability services manager referred me to the social worker. The social worker asked me what I was worried about, and whether my son was living at home with me. I asked what would happen when I died. Who will toilet him? Who will clothe him? Who will put his clothes on him? Who will shower him? Who will feed him? Who will watch him for his swallow? She asked me whether he had siblings to which I replied "Yes". She asked whether he has a sister to which I replies "Yes". The social worker then asked:"Well then, what are you worried about? She will look after him when you die." We know from research that the majority of carers in the home, who are unpaid carers, are women and girls and siblings. This Article 42B as set out here, which makes no reference to other supports in the community or outside the home, gives constitutional expression to that paternalistic and disempowering approach.

It is not a rights-based approach. It is a philosophical and ideological view. I do not know if it is unique to Ireland in our post-Catholic, post-whatever polity that disability or difference is a "burden" that ought to be borne by the family.

Another inflection point came in 2011 following all the ethical and intellectual failures of the so-called Celtic tiger when our economy was driven off a cliff. Who suffered with the imposition of austerity measures? Austerity measures were considered virtuous instruments by those who imposed them. The people who suffered most were the most vulnerable in society. At that point in 2011, my son's services to allow him to live an independent and autonomous life - pathetic as they were during the Celtic tiger era - disappeared completely and, by the way, they have not reappeared in the interim.

I was invited to a dinner in Dublin at the Stephen's Green Club, which was addressed by one of the highest officeholders in the land who had just taken that office. That individual promised us new politics, debt reduction, a negotiated reduction in interest rates and lots of other things. In his speech, he used language that I have heard older officeholders use more recently about creating an Ireland of opportunity for people to get up in the morning. I told that officeholder that I get up every morning at 6 o'clock to do physiotherapy with my own son. It is DIY physiotherapy - welcome to Ireland. We do it then because he is nice and warm in the morning and we cannot get physiotherapy elsewhere. Having pointed out that I am one of those people who gets up early in the morning, I asked him to promise that as long as he was in this new office as one of the most senior officers in the land, he would no longer impose any austerity cuts on families like mine, on the disabled and on the most vulnerable citizens in society. He said, "You do that because you love your son and I commend you on the love you have for your son. If only we had more people like you."

He told me that the State has no role whatsoever in intervening in the dynamics of the family. Basically, he gave me to understand in that room that the responsibility for people with differences lay with the family because of their bonds. This is the very language that exists among them and is included in this proposed amendment. Everything in that amendment and everything that he said to me - he did not intend to be offensive or hurtful - reflects a genuinely held belief among many people in Ireland that disability is not a human rights issue but a matter of charity, that it is a personal matter for families and that it should be the burden of people in the in the family home. That is what this proposed amendment gives expression to.

I am just simply asking the Government not to make this mistake. It is further undermining one of the most disenfranchised categories of citizens in this country with this wording. It should listen to the citizens' assembly and the Oireachtas Joint Committee on Gender Equality and take on board the wording they proposed. I do not entertain any hope that the amendment I have tabled for discussion tomorrow will be incorporated into the wording.

All Members of this House, if they have lived experience of disability, will know that we are a very disempowered group of carers in families. Disabled citizens are very disempowered. We are out of step with other jurisdictions in the European Union in this regard. We are out of step with the aspirations as set out in the UN convention. We have had proposed legislation here queried and interrogated on the basis that it would create a burden on the State. The Government is happy to let that burden reside within the family. It is unjust and unfair, and it reinforces inequality. It disempowers disabled citizens. Rather than giving that expression in the Constitution, Bunreacht na hÉireann, I think we can do better than that. We should have more ambition than that.I would appreciate it if the Minister could just add a few extra words and accept amendments, if that is possible. This comes from the heart.