Friday, June 17, 2011

Audio Blog on "Terry Pratchett: Choosing to Die"

cross-posted at Single Lens Reflections

Full Transcript:
Deborah: Hello there. Today we're going to talk about the BBC documentary, “Terry Pratchett: Choosing to Die” which was on on Monday night and is available to viewers in the UK on BBC iPlayer until next Monday night, that's the 20th June.

Stephen: The programme featured a number of different people suffering from different conditions, all of whom were either supporters of, or in the program to be helped to kill themselves. We are both somewhat ambiguous [sic.] when it comes to assisted suicide. That doesn't mean that we have any moral or ethical issues with suicide in general, certainly no religious problems with the idea. And we completely understand how severe illness can produce a situation in which you want to end your life as soon as possible rather than suffer any more than you possibly have to.

However, there were problems with the programme, which is difficult for me to say because I'm a huge fan of Terry Pratchett and his work. But there are many things to talk about and that's what we're here to do.

D: That having been said, I think we both have very serious concerns about assisted suicide and the way it is presented in the media, especially as far as the representation of disability is concerned. The idea that there are some lives which are less valuable than others, and that some lives are less liveable than others just because of a physical difference.

My problem with the assisted suicide debate is what appears to be an assumption that a physical disaster – a physical health disaster – has a special status, where if you become paralysed, if you have a degenerative condition, that's different from experiencing a major depression, becoming bankrupt, getting divorced, having some of your dreams destroyed in some way other than a physical illness. Physical illness and injury have a special status that means that people aren't expected to get over it, people aren't expected to find new ways of living within those limitations and it seems that our culture thinks that's a legiti...

S: That's not a degenerative condition, that's just how she is and I do not wish her to kill herself just because she can't say legitimate.

D: Legitimate. The problem is there does seem to be a special status of having a physical illness or a physical injury which is seen as a legitimate reason to kill yourself whereas all manner of personal disasters which lead people to suicidal ideation are not.

S: Well said. I think perhaps we should go through the characters we meet. Characters is perhaps the easiest way to see them because, over the course of the programme, we do see one of them die and hear from one person who also dies although we do not see their death. So it is not easy watching. It is not light-hearted evening viewing, so be warned if you're going to watch it.

First of all we saw Peter Smegly?

D: Smeadley.

S: Smeadley. Sorry, that's Red Dwarf for you. Peter Smeadley, whose family had got money through canning goods, who had Motor Neurone. He was not apparently hugely disabled by the Motor Neurone already. I think that's fair to say?

D: Um, not by our standards.

S: Not by our standards at least. He would struggle to get up but his struggling was on a level with our own at times and he was not obviously using many mobility aids, despite his family money which would have paid for a great deal of help which isn't necessarily available to everyone, although it should be. He is the man who we see die and we'll talk about him more in in a minute.

We also meet a chap called Andrew, who had MS. He was not a member of a canning empire and he seemed, at least, to live quite a quiet and lonely existence.

D: I think the worrying point about Andrew was he was crawling about the house, he said he got out of bed by falling out of bed and crawling from room to room.

S: On a bad day.

D: On a bad day. But even so. His accommodation wasn't really suitable for him, he really should have been using a powerchair, I would say. But whether that was simply unavailable to him, or not, I mean the fact is he didn't have the adaptions which would have made his life a lot more liveable – or at least one would presume it would do. That's perhaps not a fair thing to say but

S: I think it's fair to say because we all need the correct environment in which to live our lives properly.

D: Yeah, but he might have still been completely and utterly miserable

S: Yes indeed.

D: But you'd think that would, that should have been tried first. And it should be the case that he'd have the support to try that first but not knowing his personal circumstances I don't know whether that stuff had been

S: It's difficult to say, as is much as what we'll say during this podcast. We must say this is our own opinion of seeing what must have been quite a heavily edited collection of interviews.

D: Yes and it was – the programme was certainly edited for pathos. Lots of soaring music. We saw a lot of Peter, the chap we saw dying eventually, struggling to get up and struggling to sit down again and a lot of camera time on the point that he had a physical impairment.

S: I must say it reminded me a lot of the Disability Living Allowance forms that we've just got to, which are, if anything, a good starter in your quest towards suicide. Where they ask you do you have problems getting into and out of chairs, or they used to, I dont think they have that question now, but it was a bit like watching our answer in the form, and the answer to the form was that rather than being given benefit or using money to enable to live your life with joy and accomplishment and so on, you can just kill yourself.

D: I think it's a subjective matter. I think that there are real differences, things that aren't spoken about in the public domain because of the negative representation of disability, because of the idea that if you've got physical limitations your life must be pretty rubbish. I think there are real differences with conditions, with the things that can be utterly demoralising and soul destroying and the things that aren't. And of course that varies a great deal from person to person. But in many ways I had far more sympathy for, no sympathy is the wrong...I had sympathy for everyone, but I had far more sympathy with the desire on the part of Terry Pratchett not to go on throughout the entirety of Altziemers, because having experienced cognitive dysfunction and confusion and disorientation and memory problems too, that stuff is far worse than most physical pain, obviously physical pain after a while, but fact is I dont think I've ever had physical pain where there wasn't a drug that couldn't touch it even if I didn't have access to it at the time. But that stuff is far worse than physical pain and far worse than physical limitation. And of course with a condition like Motor Neurone Disease which Peter had, there is that possibility that he would lose some of his cognitive faculties. And I think that's much more distressing for the individual and his family and I can understand, in fact I think that is the one thing where if my illness became much worse again, that would be the one thing that I would have a lot of trouble adapting to.

S: I think at this point, rather than talking about Alzheimers, which we'll leave for a minute, because there was another person as well as Terry Pratchett who was – or who had killed himself, having suffered from Alzheimers. There was another man who had Motor Neurone, who I think was the most interesting point of view on the entire programme. He was called Mick, he was an ex-London cabbie.

D: Who demonstrated the fact.

S: Who demonstrated the fact and did this properly by asking for payment at the end. He was a really charming chap. And he had a good sense of humour and despite being much more disabled than the Motor Neurone than Peter, he was, I would guess, pretty much confined to his electric wheelchair.

D: He was in a hospice.

S: Yeah. He had moved to a hospice and Terry Pratchett said that, you know, there are other ways of dealing with things and some people move to hospices to die. I think he was wrong. I think that Mick had moved there so that he could enable his living and his enjoyment of life for longer. And he really showed this off. He was bubbly and expressive. And yet he was pro-assisted suicide. Which I almost wasn't expected. But his was a very rounded opinion. He wanted to live his life as long as he possibly could and as well as he possibly could. And he was using every resource he possibly could in order to achieve this. And I found that admirable, in a programme like that.

D: Yeah, it's quite funny because – well, not funny, funny peculiar. It wasn't funny.

S: Ho ho!

D: There really wasn't very much funny about this programme at all. What was funny peculiar was that after Peter has taken his life, Terry Pratchett says that he's the bravest man he's ever met. And in many ways I think Mick may have been the bravest man he'd ever met. And bravery is a very difficult issue.

S: Especially with disability. Especially in the current political climate.

D: And I certainly wouldn't say that Peter had taken a cowardly path. I don't think that is an useful concept either. But I think Mick had chosen to live and I think choosing to live can take an awful lot of courage. And considering that he was in favour of assisted suicide and it was something he had thought about himself and he had been in touch with Dignitas himself, but then he chose the other way, I think that was a brave thing to do.

S: Another incorrect statement, I felt, given by Terry Pratchett was that Peter's death was a happy thing because he got to decide when he died, etc. But I disagree and I think that Deborah disagrees as well.

D: Yes, I do.

S: That the death were not happy. There was a death described that we'll get to eventually which was certainly beautiful but it wasn't happy. None of the deaths were happy. Happy would have been achieving joy and all manner of other things. These were releases from fear, sometimes a release from pain, certainly a relief, but they weren't unhappy. They were just an end.

D: Two of the things I find disturbing about the assisted suicide debate in general is firstly the idea that there's nothing like that going on, that it's a common experience to suffer in agony unnecessary until you naturally die, when in fact I think probably most cancer patients in the UK die of diamorphine overdoses – I think that's a very common thing, that pain relief kills people, because we do prioritise people's comfort over people's lives at the end. But also the idea that “the happy death”, the death that people “choose to have” - that anybody can really choose a particular kind of death. I don't think that a millionaire would have chosen to die on an industrial estate on the outskirts of Zurich. I don't think that was the death they would have truly chosen. Both the idea that suffering is commonplace and we do keep lots of people – I mean, there are people who are alive after they want to be, but there are very few. And also, the idea that any death can be what someone has chosen and everything is exactly how they would like. I think there are better deaths and there are worse deaths, but none of them are happy and none of them, we have an awful lot of control over. Even when people take there own lives, I think, you've still got a very limited amount of control and if we did have assisted suicide in this country, it would still have to be terribly controlled. Terry Pratchett said he'd like to die in the sunshine, which is a lovely romantic idea, but if we had assisted suicide in this country

S: It would be in the hospital.

D: It would presumably be in a hospital – you couldn't just do it on a hillside. Although if we had -

S: Unless he slipped.

D: Slipped? I'm not

S: He's getting a bit frail, top of a hillside, slips.

D: But that's not

S: Assisted suicide because someone gave him a nudge.

D: This a very dark and sober subject.

S: Indeed. I think perhaps it's time to finally mention Hugo Klaus, who was the other man with Alzheimers. We never got to meet him, sadly. He was a Belgian author and we only got to meet his widow. He had died at – I think it was at the Dignitas Clinic?

D: No, because

S: Was it not? No because it was legal

D: It was in hospital in Belgium.

S: Yeah, because it's legal in Belgium for people to be helped to die but not for foreigners to be killed, to – sorry, for them to be assisted in their suicide. This is a problem I have because I don't see a great difference between the two. I know that many people would see a difference between the two and I fully accept that. Anyway, he had Alzheimers and his death was the rather beautiful one where he sang a song, having drunk a glass of rather good champagne and smoked a cigarette. He sang a song with his wife while he slowly died, and died singing. Which, you know, as authorial deaths go, is quite an impressive one. And this, I feel, is where the big problem comes in. That Alzheimers and other forms of dementia are really difficult. They are the things that scare us, the idea of cognitive loss, or losing oneself, of being lost in a nightmare. I certainly saw my grandmother destroyed by dementia and there wasn't anything happy about her death but it certainly was a relief. I was somewhat horrified to realise that Terry Pratchett would have to arrange his death with Dignitas, prior to becoming completely destroyed by the Alzheimer's, because he has to have enough cognitive function to say, “I want to die, I want to die, I want to die” - because they keep on asking you. I find it hard to imagine, having this option available to – even to people, what was the term that they were - ?

D: About twenty, I think they said 21% of the people who die at Dignitas don't have a serious physical disease, or perhaps not a disease at all, but they have become “weary of life”

S: “Weary of life”. Isn't that beautiful and happy? So I don't see how people who are “weary of life” can go to a place and be helped tyo kill themselves and somebody who has previously said, when I get to a certain point in my life, I want to die, that they cannot be helped. And I suppose this then becomes an act of killing as opposed to an act of suicide because someone has to actually inject them with a drug, rather than handing them a drink, if they can't then swallow it.

I find this really difficult and I think it's a big flaw in the process. And actually it makes me quite upset because I don't think people should be in that situation. As much as I find the idea of a legalised assisted suicide in the UK quite troubling, in many ways, and I would rather see greater care, it's Alzheimer's and Dementia where I see a real need for assisted suicide and yet it's there where there isn't, apparently, the option.

D: I can understand that because it's all about consent. If somebody's gone beyond the point where they're able to give informed consent, then they shouldn't be harmed. That makes utter sense to me because you've still got a person there even if they're not able to communicate. But the issue of consent brings us round to mental capacity and mental illness. Because assisted suicide in the UK is such a huge leap from where we are now. It's only decades since attempting suicide was a criminal offence and currently assisting suicide is a criminal offence, and if you see someone who is trying to kill themselves, you're allowed to assault them, you're allowed to break all manner of rules, just as if they were committing violence against another person, in order to stop them and prevent harm to them.

Meanwhile, if you repeatedly attempt to commit suicide, you're likely to get sectioned and have all your freedoms taken away from you. We take this very seriously. We assume that people who harm themselves are not in their right mind when they do so, and we tend to see this as a massively negative thing.

I think that it's extremely difficult to define when somebody could be in their right mind, when facing death. There might be people who have chronic mental ill health who are not able to manage in the way that all the people I know with chronic mental health – chronic mental ill health even, chronic mental health? There are people who may have been unhappy all their lives and may have made several conscientious attempts to kill themselves, who, on their final success, everyone who knows them may feel that they have got what they wanted, and nothing could have been done for them, and life could not have been improved for them. But for the vast majority of people with depression – whether they've got a chronic depression or whether they've got a reactive depression because life has gone wrong for them in some way – we have a cultural assumption that there is help and there is hope and it's about changing their life and changing their mind as opposed to simply opting out.

One of the most disturbing, well actually in my opinion, the most disturbing case of assisted suicide by a British person was a few years ago, a 23 year old lad, who was quadraplegic, took his own life at Dignitas in Switzerland, with the help of his parents, only 18 months after he had the initial accident that left him paralysed. And that's really scary for me. Lots of things go wrong for 23 year olds, and when you're that age, you do tend to take things in the worst possible way and you can feel like your life is over, because of the end of a relationship, because you started on one course of a career that suddenly you realise it's not going to work out the way you thought it would, because of financial problems – all kinds of things can go wrong for you. But given enough time, you sort of work it out. And certainly with illness and injury, 18 months is no time at all. The sort of peak of my feeling that my illness couldn't be lived with was about three years in, before the point where I thought, well it's not actually going to get any better and it could get a lot worse than this, then I really wanted out for a while. 18 months is no time at all.

And I think that's the scary thing, that whatever else might have gone wrong for that young man, any of those other things, people would have said, “Well, something will come up.” or “You will find another way of doing things.” But because it was something physical

S: And it sounds like it was a sporting family.

D: Yeah, I think so. I mean, this is one of the difficult things about the way that different impairments effect people. There's perhaps something especially tragic about Alzheimer's effecting a writer.

S: Hmm.

D: And when paralysis effects a sporty person, somebody who lives in their body a lot, that's perhaps worse than when paralysis effect someone whose intellectual. But even so, I struggle to see, but I feel that if we ever did put this in place, we would have to have some sort of system of defining how long and what options had been explored before people make that ultimate choice.

S: And who makes that decision? And who makes up the board that oversees who gets the chance to kill themselves? And who doesn't?

D: Yeah, I've always thought that perhaps some sort of tribunal that included a sort of pro-life disability activist, to sort of offer all the alternatives. Or an occupational therapist to sort of say “Well, you know, you feel you can't...”

S: I don't see how anyone with Motor Neurone who is in a better state than Mick, from the programme, could possibly kill themselves having seen what he achieves in his capacity in the hospice.

D: I mean, in fairness, I think one of the problems with assisted suicide and Switzerland being the only option for people in the UK, is that there's this issue of travelling and this issue of how far it gets along. Cause I mean, Motor Neurone Disease can go downhill quite quickly and people can reach the point where travelling becomes extremely difficult to do. And I think

S: And also the issue of cost.

D: Yeah. Well, yeah I know but that doesn't change when people do it.

S: Well, it changes whether they have the option to do it, which doesn't seem fair to me.

D: So you think it should be legal in the UK?

S: On the NHS. I don't know if it should be available on the NHS but I do have a problem with any service that is only available to someone who has the capacity to pay £10K for it.

D: Anyway, my point was before, about travelling, was that when people are forced to travel, they are forced to make a decision in advance of falling severely ill. And I do think that fear is such a big part of terminal illness. The fear that it's going to move beyond point. Last year I lived with friends, one of whom had emphysema and was heading – he died at Christmas in the end. But he was very frightened about what the end could be and in the end he had a very gently passing. But he could have effectively drowned to death and that could have happened quite slowly. So he longed to have some means of getting out if he could. Some days he wanted to just die because he was unhappy, because to be honest he was quite depressed. But I think, if he had had some means of getting out, it would have made him feel safer and more comfortable in facing his natural death.

I think it's Oregon in the US where you can effectively get a prescription for deadly drugs, and many of these prescriptions are filed but very few of them are actually taken, because once people have the means to get out, if they want to, they generally end up facing natural death. Because I think, as I said, with palliative care as it is, there are very few natural deaths which are these nightmare scenario of being locked in a body in agony for days or weeks or months, without being able to communicate with others, etc.

S: And I can't help but think, and it might just be the Yorkshireman in me thinking this, that if you've travelled all the way to Switzerland and have paid £10K, that when you're sat there, being offered a pair of drinks that are going to end you, you're not going to say, “Oh, on second thoughts, perhaps not today.”

D: Well yeah, this is a bit like the argument against prostitution, the idea that if you involve money, then consent isn't 100% pure any more. And the poorer you are, if you're spending £10K, you're going to go through with it. And of course, there's also the problem, one of the big arguments against assisted suicide is the fact that disabled people can become very costly, to the state and to their families, and in the case of elderly disabled people, they may feel like they're using up the inheritance they meant to pass on. And that becomes a big problem when you give people an out, because people in our culture are made to feel like burdens. I mean, especially in the political culture at the moment, we're really made to feel like Ballastexistenz.

S: And with that, I think we should leave it. I hope that wherever you are, and whatever you're doing and whatever you're feeling, that you're not wanting to die. And that listening to this has not made you any more eager to pop your clogs. So listen to us next time, we'll try to be a bit more cheery.

D: We should write, we should do some sort of podcast about the Joys of Life

S: Choose Life! Next time.

Tuesday, June 07, 2011

Looking After Yourself as Radical Political Activism

In the last year or so, the world has turned out to be a much better place than I thought it was. This despite the fact that the political situation in the UK has begun to deteriorate sharply. In fact, just a year later and I would have been in a far worse position and may have struggled to escape my violent marriage – not merely in terms of financial insecurity, but in terms of whether I would have had the practical and legal help I needed. This frightens me.

With their decimation of the welfare state and public services, this government is implicitly repeating the messages of my abusive ex and everyone else who seeks to abuse and oppress others. My health doesn't really matter, my happiness doesn't really matter. My relationships with friends and family don't really matter. My dreams don't really matter.

And obviously, I have to do something about that. Two things. One thing speaks for itself. The other is rarely spoken about but is actually more important. It is the cornerstone of every struggle for equality and social justice. It is a necessary condition for making a difference.

Looking after yourself is radical political activism.

It's radical because this is a message you are unlikely to receive anywhere in the media or from culture. You may receive messages advocating material self-interest. You may receive messages advocating a healthy lifestyle, but very often these messages come with a dose of shame and angst for your inevitable failure to follow all available advice. If you watch television, read the news or step outside in a built-up area today, you will receive lots and lots of messages. None of them will tell you that you matter and you need to look after yourself. Many of them will suggest reasons why you don't really matter.

The only people likely to give you this message are your friends and family. They might not - they might not think it even needs saying. But even if they do, you may be inclined to think that they are over-invested, that they think you matter more than you actually do. But they don't. They're right. You matter at least as much as that.

Looking after yourself is an act of modesty.

No need to get big-headed about this business of mattering. Projects and movements are often bigger than the individuals within them, but the point about this is not that it doesn't matter if you get flattened – it means that if you step back, it carries on without you. If something matters, there are always other people around to step up and help out. Often there are other people around who won't step up until you step back. You have to be very careful if you ever get to think that you're the only person who can fulfil a certain mission. Sometimes, I suppose, somebody might be. I've certainly never have been, so I wouldn't know.

Looking after yourself is a necessary condition for looking after others.

Over the years, I have often pushed myself to achieve something – battled through an afternoon at the cost of a week or three in bed – and this has sometimes been worth it. But times I have run myself into the ground, got myself into terrific debt with the Spoon Gods, costing me a long-term deterioration in my health? It has never been worth it. Not only because I suffer too much, although that matters. But also because then I render myself less useful, and for periods of time, pretty much useless. If I wreck my already damaged health, I am certainly no use as an activist, but I'm also less useful as a friend to people who need me.

Looking after yourself is setting a good example to others.

Looking after yourself gives permission to those around you to do likewise. Self-sacrifice is not a personal virtue that one can claim for oneself without harming others. If you don't rest, it makes it jolly hard for people around you to rest – and they may need it even more than you do.

Looking after yourself is an act of feminism, disability equality, queer pride etc..

As women, we're supposed to put most of our energy into looking after others and what is left into keeping ourselves attractive. As men, we're supposed to be putting individual success before everything. As disabled people, we're supposed to be constantly triumphing over adversity and as such, we're supposed to keep pushing, no matter what, to avoid being overcome by the tragedy of our existence. As queer people, we're supposed to be proving that we have wonderful perfect lives and relationships and nothing than needs working out or working on. I'm too white to talk about the demands placed on other ethnic identities which make it harder to look after oneself but I know they exist.

And yet...

Looking after yourself keeps identity politics in its place.

The goal of egalitarianism is a world where there are far fewer contexts in which we'd be forced think about our gender, sexuality, disability, the colour of our skin and so forth. In a world where this stuff comes up as often as it does, we need to spend as much time as possible just being people. I don't mean we should ever avoid the subject (it won't avoid us), but that we should spend time with ourselves and with people who would use words to describe us that have nothing to do with social and political constructs.

Looking after yourself is an act of courage.

Two of the most frightening social interactions are saying “No” and asking for help, despite the fact that other people usually respond very well to both. It's not all that courageous to carry on regardless and fall into a hole – in fact, self-neglect is often the path of least resistance, involving a downward trajectory and all.

Looking after yourself defies your enemies.

Very few people or organisations are actually invested in our suffering, but there are certainly those – including our current government – who are invested in our powerlessness. Political injustice is so often a matter of attrition rather than victimisation; things are made to be difficult not so our lives fall apart (that's collateral damage), but things are made difficult so that we give up. And it is entirely understandable when people do.

It is radical political activism that we take steps to keep ourselves in a position where we can cope with our own battles, have as good lives as we possibly can and hopefully have some energy left over for contributing to the bigger picture. We need to work on living the lives we want, even when we're still fighting for the right to live them.