Tom Clonan (Independent) | Oireachtas source

I thank the witnesses for the evidence they have given here today. I am here as a Senator; I am not a member of this committee. I am also here as a parent of an adult child with a disability. Under the UNCRPD, I am actually mandated and compelled to speak to the lived experience of disabilities in Ireland. I have a question for the witnesses, but I ask the committee to be mindful that I do not have an ideological opposition to what is proposed by this committee. I do not view disabled people as being necessarily fearful or opposed to assisted dying. According to the research, which is mostly UK-, US- and Australia-based because it is English language-based, there is quite a diversity of views among the disabled population. One statistic stood out to me as being quite interesting. Only 4% of disabled persons expressed any objection or resistance to assisted dying. Let us just get that straight in terms of first principles.

Disabled citizens are citizens just like anybody else in this State, but Ireland is an outlier in European Union and international terms with regard to the positive statement of the rights of persons with disabilities. Ireland has not ratified all of the protocols of the UNCRPD. Ireland, unlike any other state in the European Union, does not have a legal obligation to treat disabled citizens or to provide them with the therapies, surgeries and supports that are necessary for them. That is why we have children in Temple Street who are not getting complex spinal surgeries within the therapeutic window. That is why we had a disabled child left in a room off an emergency department for two months.

When you look at our community in terms of how they view their rights being vindicated, and Mr. Dolan referred to having the right to life not in the received or previously used way, how can we have a fully informed understanding of how people in our community might meet that process or decision in their life? We have to disregard the research internationally in this regard, because Ireland is completely and utterly different from any other jurisdiction.

I put forward legislation last year, the Disability (Miscellaneous Provisions) Bill, that would have given disabled citizens the right to medical treatment, surgeries and therapies, and I was told before Christmas by the Ministers responsible that they were going to oppose it because they felt it would place an unnecessary burden on the State. Can you imagine any other category of citizen whose right to life and medical treatment would be considered an unnecessary burden by the State? That is the context or, as Senator Ruane said, the frame within which we have to view and locate this discussion and what the committee might recommend to the Government.

When Covid kicked off, there was much coverage of people in northern Italy struggling to get access to ventilators. For every eight ventilators there were in northern Italy, Ireland had only one. We have the lowest number of ventilators in the European Union. The HSE, therefore, came up with a triage system to be used if Covid proliferated. It decided that not everybody would get access to a ventilator and that some people would probably die. It came up with a triage matrix under which disabled citizens would die. As the parent of a disabled adult, I was terrified by this. At the time, as Mr. Dolan will be aware, I and others mounted a major social media campaign to have the HSE matrix changed. It was changed in Trump's America to take into account the rights of disabled citizens because they have the Americans with Disabilities Act, and it was changed in Tory Britain. It took our community and a really distressed campaign to get the HSE to change the triage matrix to allow for the fundamental human rights of disabled citizens. It is not even a medical model in Ireland, or a charity model or a social model. A social model of disability is built on fundamental human rights, and we do not have those in this jurisdiction.

Mr. Dolan said legislation makes no difference, but we are legislators. Why bother with Parliament or with a rules-based society? Does he think, and I ask the same question of Mr. Kearns, that before any legislative framework is put in place for assisted dying, we should vindicate people’s rights, fully ratify all the protocols to the UN Convention on the Rights of Persons with Disabilities, and remedy the defect we have in European terms such that disabled citizens will be given the same inalienable rights to treatment and therapies that every other citizen has?

I do not know whether I will get another opportunity to speak, so I will make this point now. There is a very big community out there, with lots of DPOs and disabled citizens, and more needs to be done on this.