Mr. John Dolan:

The Deputy talked about drafting this legislation. This committee is about both legislation and possible policy; it is not simply legislation. In fact, keeping it simply within legislation would be a concern. I can rhyme off legislation that has been passed by this House over the past 20 years that was designed to improve the lives of disabled people. For example, the advocacy Act of 2007 had a section in it – I believe it was section 7 – that talked about having a director of advocacy but we still do not have that director. We have an advocacy service that is toothless. One of the three things the committee heard from Rosaleen McDonagh was on independent advocacy. To keep it simply within a legislative box would be problematic.

On the point that living well and dying well are not mutually exclusive, if you live well, you have a better chance of dying well because you have a sense that you have left something worthy and passed on something worthy. It is not just about how any of us here might have thought about this, but rather about people who routinely and persistently have experiences that are long on promises and short on delivery.

I will paraphrase a line from the 1997 programme for Government: disability is the business of every Department. It is still not the business of every Department, even though we have a UN convention that we ratified almost six years ago. It is how people will feel - not how we will logically think they should feel - that will drive this. If you are out working every day and worried about your next appointment and this, that and the other, that is a different day from the one where you are sitting, watching the clock and waiting to hear back from a doctor, physio or whomever in respect of your income supports but not hearing back or getting what you reasonably need.

I am trying to paint a picture of people living in quiet desperation. I did not want to use the word "desperation" but I could not think of another word. That is where I think this comes unstuck. I have not said a word to indicate that I am against the State putting in place provisions to support people's deaths in the way that is being suggested. I have not gone into that area. I am not suggesting anyone else did. I am trying to push it back as best I can so we consider the life experience of people and, by umbilical proxy, those who are involved in the day-to-day love and care of people who need support and advocacy. It is not all about caring support but is also about advocacy and the people involved in that regard. I hope that helps.