In March British actress, comedian, broadcaster and disability activist Liz Carr was in Melbourne with her show, Assisted Suicide: The Musical. This is an edited transcript of her address on March 23 to Victorian Parliamentarians, who will likely debate assisted suicide later this year.
Read Liz’s entire speech online at HOPE: Preventing Euthanasia and Assisted Suicide.
I don’t come at this from a religious point of view. I’m not coming here to tell you what to do.
I’m telling you what I believe and how it worked in the UK, because in the UK, in 2015, the Rob Marris Assisted Dying Bill was defeated in the House of Commons.
British actress and anti-euthanasia
speaker Liz Carr
It finally got to Parliament. The first time in 16 years that there was a parliamentary vote on it, and it was a private member’s bill and on a Friday afternoon. You know what Friday afternoons are like. We have 650 MPs in the House of Commons: 448 turned up, pretty unprecedented to be honest. That’s how important this is. This is life and death. It really is.
The vote went 330 against legalising assisted suicide, to 118 who were for it. Almost three times! We didn’t expect the defeat of the bill to be that strong. Ultimately what swung it, I think, was that nobody, nobody wants another human being or themselves to have a bad death.
Whatever we think on this subject, I assume we all want a good death for everyone. It would be ridiculous if we didn’t want that. I want that too. I just don’t believe that we should legalise and get states and medical involvement in that, or a more formalised medical involvement in that. That’s the only difference, and I think that’s what swung it, even though a lot of MPs were of the opinion that, yes, in some respects we want this.
I got the Churchill Travelling Fellowship and worked with BBC World Service and made a radio documentary, and I visited all the countries where assisted suicide was then legal. The only place I didn’t visit was Canada. I have been there since and I know what’s going on now; I made a documentary on that. A little bit like your Andrew Denton, we are two of the few people who visited, and interestingly he thinks it’s fine. I don’t think its fine, and we presumably saw some of the same things. There you go. Of course that’s going to happen, but I come at it as a disabled person, and that’s relevant here.
Disability rights activists have quite a strong voice in the UK. By the way, I’m going to talk about “assisted suicide”, not “assisted dying”. That’s partly because I think we should call it what it is.
Now many people will come back at me and go, but assisted dying is just for people who are at the end of their life. They’re dying anyway. But what we’ve seen in other countries is that that is not necessarily true. It is not about that they’re actually dying – that could be many, many months or years off – but that they are choosing to take their own life. It’s still that act, so it should have the safeguards that you get when you do call it suicide, which are prevention strategies.
What we do know is that when you change the language, and you start calling it “assisted dying”, and you don’t use terms like “euthanasia” and “assisted suicide”, you increase public support. “Assisted dying” is far more popular than “assisted suicide”. What we call it is equally a political choice.
Why am I opposed? Well, I’m not opposed to suicide. I don’t want people to feel that they have to end their life. I don’t want them to be in that position. I believe in suicide prevention, but ultimately that’s an act for an individual. Where it gets tricky for me is the issue of state involvement, and the issue of changing the criminal law, and the issue of medical involvement, on a formal level.
At the moment the law acts as a deterrent. It does in the UK. And that it is a deterrent is really useful.
What happens when we introduce a bill and look at what the bill might look like? I know we don’t know what it looks like yet, because it has not been created, but looking at recommendation 49 (in the Final Report of the Victorian Parliament’s “Inquiry into End-of-Life Choices”) we can see what that might be. What it does is it allows, it indemnifies doctors, and it takes it away from being a crime; and that can be a good thing. But it means that there’s very little investigation.
It means that it then happens behind closed doors. It’s very hard then to prove anything, because if a doctor – and this happens in Oregon – if a doctor has supported a person through this, and ticked the boxes, they also then facilitate the prescription process and they also evaluate that process to the Oregon Health Board. Therefore, the person doing it and assessing is also the person accountable for it.
There was a documentary on this week on ABC. There are regular documentaries on your TV channels and in the UK that show people asking for assisted suicide laws, and the right to die. Most of those people are not terminally ill, and that is often very confusing. We see people that look like us. We see people that can’t do certain things, can’t wipe their own bum or can’t get dressed, or are worried about those things. Well, those are often things around disability.
They’re often around loss of autonomy; loss of dignity. These are things that disabled people feel that they can contribute to the debate, because we have lots of experience in that. We’ve probably lived a life of that. It is in a way, in many ways, about us, and it will be, because we’ve heard stories from many disabled people about how complete strangers can tell you that they couldn’t imagine what it would be like to be you, and surely you’d be better off dead.
I know that if I went to the doctor and said that I was having trouble, regardless of the fact of what I do for a living even, I think it would be easy to convince them that my life was not worth living. Far more than my non-disabled partner, and that’s a big thing for me.
Look, I almost feel that if you’re going legislate, legislate for everyone, or legislate for no one. I’m a bit all or nothing, but actually why choose one group of people? Why is one type of suffering worse than another? What if you lose a child? I mean that must be the worst pain. It’s the worst pain I can imagine. Losing a child must be dreadful. Now that’s suffering, but we don’t support them to end their life. We give them what they need. But when somebody becomes ill or disabled we support them to end their lives.
What does coercion look like?
How do we know someone’s not being coerced? Coercion is not about being dragged to your death. Coercion is worse than that usually. It’s usually social coercion, and it looks in the form of you decide yourself, because life’s so poor, but that’s not always physical or mental. It can often be because you’ve not got the support you need or because you’re with a family that you don’t want to burden; and even if they say you’re not a burden, the fact that they’ve got the kids to look after or they’ve got work and they’ve got life, you can feel that. How do we unpack all of that?
I went to all the countries, as I said, where assisted suicide and euthanasia are legal. Some of the highlights for me: I met fascinating people. I loved who I met, on both sides of this debate. It’s tough. The people who were driven to pass these laws have seen some horrific things. They’ve seen people that they love, dying. We’ve probably, many of us, seen that. Legislation won’t change that, by the way. Legislation doesn’t get rid of bad deaths, and assisted suicide isn’t necessarily a good death. It can be ugly. It can take hours.
I met someone whose husband took 21 hours to die. They were still happy with that actually, but it was not quick. In the Oregon model, people get prescriptions. Its 100 capsules and they can make you sick and sometimes they don’t work. This idea of it being a beautiful death or an easy or a quicker death; well, it can be in some ways but it’s not always the most pleasant, and that of course is it: death is always going to be messy, whether we have assisted suicide laws or not.
People talk to me about the slippery slope. Firstly I don’t agree with that phrase, because it suggests panic and fear and things out of control. The extension of these laws is much more controlled than that. It’s much cleverer than that. It’s done in the name of equality. If you introduce a law in this state only for those with terminal illness, what will happen next is people with other conditions will want to be included. They will. It’s already happening. The law hasn’t even been enacted to its full extent in Canada yet, but already people with dementia or impending dementia are calling for that extension. Some disabled people are calling for it. “You’ve excluded us.”
We probably know about Belgium. Belgium where just for being old, where children … There was the first death of a minor recently from euthanasia. Last November, there was somebody with alcoholism based on that extension I’ve just mentioned.
Again, in the U.S. in the states where it has been legalised, and particularly Oregon, there has been a massive increase in suicide since it was legalised.
Rarely is pain the issue
It’s also not about pain. It’s very rarely about pain, and that’s useful to know.
In the tick box forms that you fill in in Oregon, the reasons that people give, the dominant reasons are about loss of autonomy, loss of dignity, loss of the ability to do day-to-day activities. Pain is the second to last reason. It’s in the 30 per cent as opposed to the 80 per cent and 90 per cent, where the other figures sit. This is really about loss of autonomy and dignity.
I guess one of the things is we don’t need to make a choice necessarily between suffering and suicide. There is a lot that we can still do in terms of palliative care and hospice care and support for people. Can we alleviate all pain? For most people, yes, but there will always be some people that we can’t help.
But do we change a law for those people, and remove protection for the others, and is it as straightforward as that? Is it about the benefits to the few? Or is it about the risks of the many?
The common good
Laws should be about protecting the majority and safeguards are difficult: the acknowledgement that we need safeguards is an acknowledgement of risk in the first place.
Many disabled people oppose legalising assisted suicide. And what I hear from around the country too, many indigenous communities oppose it. In the U.S. African-American communities often oppose it more than other communities as well. People who have been dispossessed. People who have had a negative experience of state involvement in their lives often are more reticent about these laws.
The people who usually want these laws usually look more like the lawmakers and the doctors implementing them, funnily enough.