What do you make of Esther?

A campaigner’s call to change an assisted dying law got family calling MND sufferer Michael Wenham. Here he shares why such legalisation will increase people’s fear of dying.

Michael Wenham

Michael Wenham lives with a motor neurone disorder, Primary Lateral Sclerosis. He blogs at My Donkey Body.

Today Programme post about Esther Rantzen's comments.

BBC.

"What do you make of Esther Rantzen?" asked my brother.

I knew what he was talking about, as no doubt all listeners of Radio 4's Today Programme would have done. Clearly the advocates of assisted dying, or specifically suicide, have launched the next round of their campaign, even enlisting the late Diana Rigg, whose resemblance to my wife was once commented on by an old welsh policemen, as a witness. The Today Programme devoted a great deal of airtime to the subject over a number of days.

My reply to my brother was that I thought it was a good thing if we were more open about the subject of death and dying. After all they are events everyone without exception will come in contact with at some point or another. So, the sooner we stop treating it as a taboo subject the better. However, the dangers of legalising assisted suicide, are proved by places like Canada and Belgium.

I don’t see any way to protect us from such coercion, internal or external, except to demonstrate through legislation that every life, however tenuous, is equally important.

In January this year I made a submission to the Parliamentary Health and Social Care Committee consultation on assisted dying/assisted suicide. Here’s some of that submission.

“I am writing as an individual who was diagnosed with a rare form of Motor Neurone Disease (MND) twenty-two years ago and who has experienced the condition’s relentless deterioration since then. There are a number of my contemporaries who have survived that long. That, and witnessing the ravages of the disease on friends in our local MNDA branch plus an Ethics qualification from Oxford, is the extent of my expertise.”

“My first observation is how positively my contemporaries, with short or longer prognoses, with the disease seize hold of life. Clearly there are some who, like Rob Burrows, devote themselves to fund-raising and creating awareness; while others enjoy the opportunities of life that come their way. What might have seemed a death sentence has proved a challenge to live.

"Secondly, I have recently discovered myself how expert professional care can enhance what is often portrayed as undignified dependence. Good caring can in fact add to quality of life. The sad thing however is that it is not something which the state will normally provide. Along with terminal palliative care, domestic social care must surely be a spending priority for any government that cares about the well-being of all its citizens. I’m fortunate to live an area of excellent MND provision and good, though not abundant, palliative care. But I understand that this is not equally spread through the country. If it were, I suspect it would reduce the fear of dying which must be a major motivator for assistance to ending one’s life.

"Ironically, in MND, according to the Association’s information sheet, How will I die?, those fears are greatly exaggerated:

In reality, most people with MND have a peaceful death. The final stages of MND will usually involve gradual weakening of the breathing muscles and increasing sleepiness. This is usually the cause of death, either because of an infection or because the muscles stop working.

Specialist palliative care supports quality of life through symptom control. practical help, medication to ease symptoms and emotional support for you and your family.

When breathing becomes weaker, you may feel breathless and this can be distressing. However, your health care professionals can provide support to reduce anxiety.

You can also receive medication to ease symptoms throughout the course of the disease, not just in the later stages. If you have any concerns about the way medication will affect you, ask the professionals who are supporting you for guidance.

Further weakening of the muscles involved in breathing will cause tiredness and increasing sleepiness. Over a period of time, which can be hours, days or weeks, your breathing is likely to become shallower. This usually leads to reduced consciousness, so that death comes peacefully as breathing slowly reduces and eventually stops.

"So, this is a third and subtle danger of legalising assisted dying/suicide. It would increase people’s fear of the inevitable fact of death and dying. I think this can be one factor in explaining why, in jurisdictions which have introduced it, we see it being extended beyond the first strict limits. It is held out as an answer to this fearful fact, death, whereas in fact death and dying should be talked about in realistic terms, as normal, as concisely outlined by Dr Kathryn Mannix. As she says, normally dying isn’t as bad as we think.

If the government should be doing anything, the first thing it might well do, is to promote informed education about dying of the sort exemplified by specialists such as Dr Mannix, as well as adequately funding her former specialism of palliative care. It should start with schools’ curricula. After all every child will have encountered death at some stage.

Finally, the dangers of coercion, in my experience, are not so much external as internal. It’s often rightly observed that prolonged pain is worse for the engaged spectator than for the sufferer. If you care for someone, seeing them struggling is barely tolerable. You may wish to see their struggle over, but underlying that wish is your own desire to be spared more of your own horror show. The person who is ‘suffering’ however has that strong survival instinct, common to all humans, and is more concentrated on living than dying. Having said that, when you are depressed, as might be natural, that instinct gets temporarily eclipsed. Then you need protection from your own dark sky. It is at such times that your other inner demons emerge: your sense of being a burden - to your family, to your friends (if you have any), to the NHS and to the state purse; your fear of losing your savings and of leaving nothing to your loved ones; your fear of pain and of dying (exaggerated by popular mythology), and your sense of suffering, heightened by your depression.

"For most of us with long incurable diseases, it’s these internal perceptions that are most coercive, although they can be easily compounded or even exploited from outside. I don’t see any way to protect us from such coercion, internal or external, except to demonstrate through legislation that every life, however tenuous, is equally important to our society and worth caring for. ‘Any man’s death diminishes me...’ and so we will value it to the end."

I'm grateful that when I received my 'motor neurone disorder' diagnosis, which was initially frightening, I couldn't be tempted to opt for an early death. Instead of one Christmas with my family (as I warned them), I've enjoyed 22 more Christmases. That was the law against suicide fulfilling its safeguarding function, protecting the vulnerable, as I was then. Contrary to my preconceptions, my form of MND (PLS) is very gradual and I've been able to live a full if increasingly limited life, thanks to my wife, Jane, who cares for me 100 per cent. 24 hours a day, seven days a week.

My view is still that legalising assisted dying/suicide has more cons than pros. The better choice is to invest in hospice and palliative care, so that everyone may have access to pain and symptom care in the last years of their life.

Explainer

Art

Culture

Identity

2 August 2024

5 min read

Controversial art: can the critic love their neighbour?

What to do when confronted with contentious culture.

Jonathan Evens

Jonathan is Team Rector for Wickford and Runwell. He is co-author of The Secret Chord, and writes on the arts.

Two people run though a darkened art gallery towards a body lying amongst photography paraphanalia

Audrey Tautou and Tom Hanks, The Da Vinci Code.

Sony Pictures.

In the wake of the controversy over the Olympic opening ceremony, based as it was on a fundamental misunderstanding on the part of Christians as to what was being portrayed, you may be perplexed or confused by the different ways Christians respond to controversial art or media portrayals that are perceived to be an attack on core Christian beliefs. If that is you, here are some thoughts as to why it is that Christians react in a range of different ways.

Our responses are always underpinned by depth of relationship with and commitment to Jesus, the one who has turned our lives upside down and filled us with his Spirit. Our sense of what it is that Jesus has done for us and what it is that relationship with Jesus means to us is the determinative factor affecting our response when we perceive the One we love and who loves us to have been maligned or mocked.

For some, we feel a need to stand with or defend Jesus whenever we perceive that he is under attack, and we have seen that instinctive response apparent in reactions to the Olympic opening ceremony. However, instinctive emotive responses run the risk of pre-empting more reasoned or reflective responses. That has certainly been the case here, as what many Christians perceived to have been a parody of the Last Supper was not actually that at all. Instead, the sequence was a portrayal of the feast of Dionysius, so had nothing to do with the Last Supper at all.

Christians, as here, are often too quick to make allegations of blasphemy without actually understanding what is being portrayed. I have, unfortunately, seen many similar examples within my lifetime. In the 1970’s and 80’s films like Monty Python’s Life of Brian and Martin Scorsese’s The Last Temptation of Christ resulted in thousands of Christians demonstrating outside cinemas, while Christian organisations, like the National Viewer’s and Listener’s Association headed by Mary Whitehouse, lobbied for those films to be banned.

God does not need human beings in order to be defended, particularly from perceived mockery.

However, interestingly, the release of The Da Vinci Code in 2006, although it dealt with similarly controversial material for Christians, did not result in mass protests. Instead, through seeker events, bible studies, websites and booklets, churches encouraged discussion of the issues raised by the film while clearly contesting the claims made about Christ and the Church.

The protests against such films often did not tally with the content of the films themselves and displayed a lack of understanding of them, their stories and meaning. As Richard Burridge, a former Dean of King’s College London, has said of Life of Brian, “those who called for the satire to be banned after its release in 1979 were ‘embarrassingly’ ill-informed and missed a major opportunity to promote the Christian message”. Life of Brian portrayed the followers of religions as unthinking and gullible and the response of Christians to that film reinforced that stereotype.

As a result, the Church had to learn again that the way to counter criticism is not to try to ban or censor it but to engage with it, understand it and accurately counter it. The Da Vinci Code events, bible studies, websites and the like that the Church used to counter the claims made in The Da Vinci Code featured reasoned arguments based on a real understanding of the issues raised, making use of genuine historical findings and opinion to counter those claims. These created a conversation with the wider community that was far more constructive than the kind of knee-jerk reactions we have seen to the opening ceremony of the Olympic Games.

Some of these knee-jerk reactions derive from a sense, in the West, that the dominant place Christianity used to have in society has been eroded leading some to think that our values and beliefs are under threat. This reveals an underlying insecurity which it is surprising to find in those who believe that God is all-powerful and in control of human history. God does not need human beings in order to be defended, particularly from perceived mockery.

Indeed, the reverse is the case, as, in Jesus, God deliberately entered human history to experience human life in all its facets, including real mockery and suffering, to show that such experiences are not defining and can be transcended through love and sacrifice. Such a God does not require those who follow to become defensive themselves when the path of mockery is actually the path to resurrection and renewal.

Cultural comment is as much about love for neighbour as any other aspect of Christian life.

So, what might a more constructive and productive response to controversies entail? Taking time to reflect and to understand what it is we are experiencing would be a much better place to start. The Olympic opening ceremony was a celebration of French culture, which highlighted images from the Louvre in particular. Leonardo da Vinci’s ‘Last Supper’ is in Italy and does not include a blue Dionysius. With some reflection and investigation, that would quickly have become apparent. Similarly, the scene to which Christians objected in The Last Temptation of Christ was just what it said on the tin, the last temptation Jesus faced. It was a temptation that he rejected, and the film was all the more powerful as a depiction of the incarnation as a result.

Then, we can see that what the Christ who embraced human life through the incarnation calls us to is a charitable hermeneutic (how we interpret), when it comes to receiving, understanding and commenting on the culture around us. Cultural comment is as much about love for neighbour as any other aspect of Christian life. Our charitable hermeneutic was summed up for us by St Paul when he wrote of going through life looking for “whatever is true, whatever is honourable, whatever is just, whatever is pure, whatever is pleasing, whatever is commendable”. Sister Wendy Beckett, the cultural commentator who most recently has best exemplified this charitable hermeneutic achieving huge popularity as a result, wrote of “a beautiful secret … that makes all things luminous … a precious gift in this confused and violent world”.

With the beautiful secret of a charitable hermeneutic, we might, perhaps, look again at the Olympic opening ceremony and appreciate the intent of Thomas Jolly, the artistic director behind the ceremony, when he said that religious subversion had never been his intention: “We wanted to talk about diversity. Diversity means being together. We wanted to include everyone, as simple as that.”