Tom Clonan (Independent)
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I thank our fellow public servants from the CSO for attending. The CSO is independent and impartial and the data it gathers are crucial to how we evolve policy and move forward in this republic.

I echo Ms Gibney's call, which was reiterated by Nem, Ms Hassett and others, for the full ratification of the UNCRPD and to empower IHREC further to hold the Government to account and to report on the situation. Ms Browne is chair of the DPO Network and Ms Hassett, Ms Murphy and Nem are members. It is vital that DPOs be front and centre in how we navigate this space and what informs how we proceed.

Regarding the gathering of data and statistics, I am reminded of IBM in the US when it had its first supercomputer in the late 1960s and early 1970s. IBM fed a great deal of data into it about household accidents in the US. The computer crunched the data and concluded that 90% of those accidents happened on the bottom or top step of the stairs. IBM asked the computer for a solution. Using its quantitative, deterministic and positivistic software, it concluded that the solution was to remove the top and bottom steps.

I often find that many of the issues that confront and challenge our community of disabled citizens and carers are due to a deterministic, positivistic and, as I believe Ms Gibney stated, activities-based measure of our lived experience. For example, we have decongregated 5,000 people from congregated settings. That is fantastic, but where have they gone? That information is not mapped. Many are homeless or are back with parents in crisis. On paper, it looks like a positive outcome, but the qualitative lived experience is something different.

I learned from my own experience.

When I did my doctoral thesis on our armed forces, the first two years of that was a quantitative analysis of that environment. I captured the universe of the data - everything. When looking at the quantitative data, there was no problem as it applied to women. There were patterns in the data which suggested it was an explicitly discriminatory organisation but it was only when I spoke to my female colleagues, when we gathered data in that way, complementing the quantitative data set with qualitative phenomenological lived experiences, that all of the horrific lived experiences of sexual violence, sexual assault and rape emerged. Does the CSO employ any qualitative instruments or tools for data gathering of the lived experience of disabled people, which should come from the DPOs? Does the CSO conduct interviews? Is there any mechanism for incorporating participation, observation or lived experience?

What would inform a set of questions on a census document? Are DPOs formally engaged in the process of informing how the census should be compiled? When we completed ours last year, I felt that based on the responses that would flow from it, as a document it did not really capture the challenges we face as a family. In the absence of those kinds of qualitative instruments for gathering data, is there a role for the universities to do this? Should there be protected research funding in order that we can properly capture the lived experience using and an all-around 360° perspective?

I echo what Ms Browne said about DPOs. Since joining this committee I have often been involved in a meeting or a consultation with a large number of people, all of whom are being paid a salary, are receiving mileage allowances, subsistence payments and so on, with the exception of disabled people. They find themselves there at their own expense with very meagre resources and all the challenges they face in trying to get out of the front door in the morning. I echo Ms Browne's call for full and proper financial support for DPOs.

I thank Ms Gibney and Dr. Elliot from the Irish Human Rights and Equality Commission, IHREC, for showing such leadership and bringing the experiences of our disabled people out of a medical model or a charitable model into a fundamental human rights narrative, which is so important. DPOs are the future of that and the key to ensuring that we continue to move into that space.