Tom Clonan: Ireland is an Ableist Republic - No Legal Rights

Thank you very much and I want to thank Kathleen and my colleagues in Sinn Féin for inviting me here today. So I'm a Senator in Ireland's Parliament. I'm also a parent. I have four adult children, a 26-year-old boy, 24-year-old, 22-year-old daughter and an 18-year-old son. My 24-year-old son has a neuromuscular disease and he's a wheelchair user and he's partially sighted. So I'm also a carer. And I want to tell you that I have come from the past to meet you here today because Ireland is an ableist republic. It is the only country in the European Union, including England, Scotland, Wales and Northern Ireland, where disabled citizens have no legal rights whatsoever to treatment, to care, to support, to independent living. We're the only country. And I want to ask you, as Ireland assumes the presidency of the European Union, I want you to ask every Irish person you meet, why does Ireland treat disabled citizens and carers with the contempt that they do? And it's shocking. We have children on urology waitlists who are becoming infertile, who are becoming incontinent. It is de facto sterilisation of disabled male and female teenagers in Ireland. We have children on the spinal surgery waitlist, including my son, who are allowed to deteriorate to the extent that surgery is not possible for them and that they become an anaesthetic risk. And children are dying in Ireland for want of the routine surgical interventions that they get in other parts of the European Union. So that's what happens when you don't have a rights-based approach. You have suboptimal outcomes, life-limiting, life-altering outcomes. In terms of caring, we have 55,000 disabled adults over the age of 25 living at home with parents over the age of 60. And that is a demographic time bomb for the Republic of Ireland. And as you have said, it is regarded culturally, philosophically, ideologically in Ireland that care is seen as the responsibility of the family. And who in the family? In 2019, when my son went from paediatric to adult services, I asked our health services executive what was the plan for him. And they said, well, he lives at home with you. That's the plan. And I said, but what happens when I die? And they said, OK, I'll have to put you on to a social worker. So the social worker in 2019 said, does he have any siblings? I said, yes. Does he have a sister? Yes. Well, she'll look after him when you die. That's the plan. So 99% of unpaid carers in the Republic of Ireland are women and girls. So this is an intersectional issue around human rights. And no other protected category of citizen in the Irish Republic would be treated this way. If you were to deny people access to surgery and supports on the basis of ethnicity, on the basis of sexual orientation, on the basis of religion, Ireland would come to a halt, quite rightly so. But if you're disabled, you're in big trouble in the Republic of Ireland. And we have a case of a 97-year-old looking after a disabled adult in their 60s. I was approached last year by a woman who's 92. She's a cancer survivor. And her daughter in her 50s, who's a wheelchair user, was returned to her from a congregated setting. She asked for help and was told, we cannot give you help until you die. So that is the situation. And I really urge all of you, every Irish person you meet and every Irish politician, with the exception of Kathleen here, ask them, why do you treat disabled citizens in this manner? I'm just going to conclude by saying that in 2025, the government authored a referendum that would give constitutional expression in Ireland that care and caring was the primary, if not exclusive, responsibility of the family. And that the state would have no role whatsoever in supporting disabled citizens to live independent, autonomous, fulfilled and happy lives. That referendum was defeated by 75% of the people who voted. So there is hope for Ireland, but we need pressure from our European partners. We are 30 years behind Britain in terms of legislation. We are 50 years behind Germany. And look, the World Health Organization tell us that every single human being will become disabled at some point in their life. For an average of eight years of our lives, we will have a disability. For most of us, that is at the end of life. And if it weren't for people like, I don't know how to pronounce this properly, we would not be able to live our lives with dignity. And in my home, we have people from Cameroon, from Nigeria, from Burundi, from Malaysia, from South Korea, from Kerala in India, the most beautiful people come into our home and look after my son's intimate care needs. But he has no right to those supports. And as you say, many of those, most of those people are working on minimum wage because the government has outsourced its responsibilities to the for-profit private sector and it's a broken model and it's a broken system. But thanks for allowing me to be here and to speak of my lived experience. And I want to pay tribute to Catherine and also to Cara, who is going to speak shortly, who is a fantastic advocate and a carer for the rights of disabled citizens and carers in Ireland. Thank you.