Meeting of the Parliament 10 March 2026 [Draft]
I thank the member in charge of the bill for the way in which he has taken it through Parliament, and I thank other members for the way in which they have engaged in the very sincerely personal debate. I know that members are taking very seriously the weight of these decisions. I also thank the legislation team, which has done a power of work in getting us through many amendments, and Parliament staff for the time that they will put in to help us get through the amendments.
As currently drafted, the bill defines someone as terminally ill
“if they have an advanced and progressive disease, illness or condition from which they are unable to recover and that can reasonably be expected to cause their premature death”.
That definition is, as my colleague Daniel Johnson has pointed out, incredibly broad. It includes many disabled people—indeed, as I said at stage 2, it could include me. I recognise that the amendments in this group try to provide greater clarity, but I do not believe that they resolve that fundamental issue. The provisions in them are highly subjective. I acknowledge that the member who has lodged them recognises that, but I will talk briefly about why that is important.
People’s experiences and their views about what they can live with change over time. They are shaped by the society in which we live, as well as our views of ourselves. Absolutely everything that I have, I have had to fight for. I had to fight to get overnight care so that I could go to the toilet, because the council had said that it would be cheaper to use incontinence pads. That fight in particular nearly broke me. I was ill, I was crying daily, and the pain from my advanced stage arthritis, which will likely result in early death, got worse, because I was worn down by fighting. I am one of the most empowered disabled people in the country—one of 129 people who have the privilege of sitting in this Parliament—and I have been broken by how hard it is to live, or to try to live, like everyone else. Even when pain is intolerable, it is the everyday ableism and discrimination that make me feel like I cannot go on.
When I have the support that I need and when I am not fighting, I and people like me can live well, and we can thrive. We believe that life, at that point, is tolerable and even well worth living. We even believe that in circumstances in which others do not think that a life like ours would be worth living.
I want to take a moment to talk about other peoples’ views on tolerating loss of function and why that is also a complex and subjective concept. People often portray the lives of disabled people or people who have lost function as being intolerable. Paralympian Tanni Grey-Thompson, who members recently had the opportunity to meet, was told by someone that they would rather be dead than incontinent, as she is. They said that to a Paralympian who sits in our House of Lords.
People question daily how people live with loss of function—for example, how I cope. They feel that it is acceptable to assume that a life like ours would be intolerable and not worth living. People question that regularly.
Presiding Officer, someone has to shower me. Someone has to take me to the toilet and help me in the toilet. Someone has to do almost everything for me. Many people find that to be undignified and are not afraid to tell me that. On occasion—for example, if I have no care or the toilet is not accessible—it can be quite undignified.
The point that I hope that I am making is that I have learned to live with the good, the bad and the ugly of my life. That does not mean that I am not scared of loss of function, as I imagine that everyone is—of course I am. I want to keep the little function that I have left, and I am worried about what would happen if I do not.
However, I have seen people face adversity on a daily basis, overcome it and enjoy life. With the right support, people can lead great lives despite otherwise intolerable pain or suffering. What is intolerable for me has moved over time and might not be tolerable for someone else. We must be very cautious about the message that will be sent if help, aids, adaptations, significant care from others and the inability to use the loo or shower by ourselves are circumstances that could be interpreted as indicators that someone’s life has become intolerable.
Others often view disabled people’s quality of life as being lower than the disabled people themselves do. When we ask people to rate their quality of life, even in difficult circumstances, disabled people often rate it higher than the professionals in their lives. That is an important fact for us to remember when we are considering the details in this bill.