Tom Clonan on why he voted no in the care referendum
Rollingnews Leah Farrell/© Picture: Ie
The 40th amendment of the Constitution (Care), Article 42.B is a missed opportunity.
The wording of 42.B gives constitutional expression to the conservative ideological position that the primary responsibility for care resides within the family and family members. The article is not rights-based and is very carefully worded to indemnify the State and the HSE from any legal obligation to support family carers. 98% of unpaid family carers are women and girls.
The use of the word ‘strive’ is designed to ensure that State supports
for care are not legally enforceable or ‘justiciable’.
The wording carefully chosen by Government and its legal advisers omits any reference to rights to care in the community or outside the home as explicitly recommended by both the Citizens’ Assembly and the Joint Oireachtas Committee on Gender Equality. Ireland is an outlier in this regard. We are the only jurisdiction in the European Union where disabled citizens and carers have no legal right to treatment, therapies, interventions, surgeries, or supports. This is one of the reasons why disabled children and adolescents have become permanently paralysed, further disabled — or dying — on waiting lists in Ireland.
As a parent and carer for over 20 years, I have experienced first hand the lack of supports for disabled children and adults like my son. From the moment he was diagnosed with a rare neuromuscular disease, our family entered the parallel universe which exists in Ireland for disabled citizens.
Quite simply put, Ireland is one of the worst countries in Europe in which to be disabled — whether that be physical disability, intellectual disability, neurodiverse, or simply elderly with additional needs.
Our waiting lists, for even a basic assessment of need, are so chronic and catastrophically long that no cohort of disabled citizens receives adequate or meaningful treatment or care within the therapeutic window. This results in countless Irish disabled citizens suffering life-limiting, life-altering, and sub-optimal outcomes that would not be
tolerated in other EU member states.
The context for the wording of article 42.B is particularly interesting. Last year in Seanad Éireann I introduced the Disability (Miscellaneous Provisions) Bill 2023, which would give disabled citizens the legal, enforceable right to the treatments, therapies, and care
supports identified in an assessment of need. Our Cabinet gave an instruction to strike the bill down by an amendment that would ‘kill’ the bill.
In December, Minister for Disability Roderic O’Gorman told me that he would not support this bill as it would impose a challenging ‘burden’ on the State in terms of resources. Let there be no confusion here, our Government is hostile to the idea of conferring legal rights on disabled Irish citizens.
On January 31 in the Seanad, I proposed an amendment to a Government private members’ bill on ‘Care’, that Ireland immediately ratify all protocols of the UN Convention on the Rights of Persons with Disabilities — including the optional protocol. This would have conferred legal rights on disabled citizens — particularly under Article 19 of the UNCRPD — to live independent, autonomous lives outside the family. Government senators voted against this amendment.
When my son turned 18 and moved from limited paediatric supports to adult services, I contacted the HSE to find out what his care plan was. The HSE disability services manager expressed surprise.
“He lives at home with you doesn’t he? That’s the plan for him.”
I then asked what would happen to my son when I died. What care supports would he receive to live independently?
I was passed on to the HSE social worker. She asked me if my son had a sister. When I replied yes, she stated: “She will look after your son when you die. What are you worried about?”
This conversation occurred in 2019, not 1819. It is emblematic of the patriarchal and paternalistic view of the Irish State towards carers and disabled citizens.
The wording of Article 42.B was drafted by a polity that is hostile to the rights of disabled citizens.
It gives constitutional expression to an ableist view that disabled citizens must rely on family members for care — and deliberately excludes the right to an independent, autonomous life in the community.
I’m not part of a vote no campaign. Each Irish citizen will vote according to their conscience. I cannot vote for this amendment.
It subordinates the rights of an entire group of Irish citizens in a way that would not be tolerated for any other identity, by way of ethnicity, religious formation, LGBT+ status, or any other protected status. It is frankly heartbreaking.
The World Health Organization notes that every citizen will become disabled at some point in their lives. Many of us do not have or desire family supports. We all hope to live autonomous, dignified lives.
Anyone who votes for the wording of 42.B is subordinating the inalienable human rights of our most vulnerable citizens and wittingly or unwittingly engaging in an act of individual and collective self-harm.
- Tom Clonan is a retired Defence Forces captain and security analyst and a member of the Seanad.