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.

Article

Comment

Gaza

Israel

War & peace

6 October 2024

7 min read

Gaza-Israel: bankrupt ideas still capture too many of us

One year on, we’ve turned no pages, learned no lessons, made no progress.

Todd Deatherage

Todd is the Executive Director and Co-Founder of Telos Group. It forms communities of American peacemakers across lines of difference and conflict, including Israel/Palestine.

A graffitied concrete border wall stands below a blue sky and dusty ground

Border wall between Gaza and Israel.

It’s the first anniversary of October 7, and we’re left with the grim task of finding a way to appropriately honor the dead, stand in solidarity with the bereaved, and mourn with all who mourn. And we do this as we acknowledge our ongoing collective failure and the unimaginable and avoidable loss of so many innocent lives, each one with its own promise and possibility forever denied. In the end, it’s hard to find a way to commemorate the horror of that day because it’s still going on. We’ve turned no pages, learned no lessons, made no progress.

Someday there will no doubt be a grand and somber memorial that tells the story of the brutal October 7 attack. The victims of that day will be remembered, the captives and their fates memorialized. And some day there will be a museum that tells the story of what many already believe will be characterized in the historical record as a genocide in Gaza. To what we already know of the massive destruction of a place and a people will be added details that will be excavated from the rubble, testimonies from the traumatized survivors, heartbreaking tales of orphans and of the destruction of entire families. Maybe these places of collective memory will offer greater context for the world in which the tragedies that created them took place, some kind of “never again” lessons to learn, and no doubt some sharp analysis of the failures that led to these days of great darkness. If these attempts at memorialization are honest, they will hold many of us up to withering critique. We’ll be in the museums too, enduring rebuke for the indifference that led us here or for our zero-sum thinking that could only imagine a world born of and sustained by violence in all its forms.

These are lone and lonely voices in a land besieged by brutality, dehumanization, and ideologies of ethnic and religious supremacy. But they are not unicorns.

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If we don't want the story to be about our blind complicity, but about our courage, we still have time to own our agency. Because this isn't over yet. We can mark this day by remembering that it will continue to be like all the others until we all do our part to achieve a ceasefire, a release of captives, and an end to support for systems of inequality and control. In whatever ways great or small that we can, we have to reject the logic of violence and the ideologies of hatred and exclusion. And to be active participants in cultivating in ourselves and in our communities an imagination for the way each human life is sacred and our flourishing is tied to that of our neighbors.

We do this even as we pause and honor the innocent dead in Israel, in Gaza, in the West Bank, and now in Lebanon. We mourn with all those who mourn. But we do that with people still dying in Gaza, with millions of Palestinians still displaced, with disease and hunger rampant, with Israeli hostages still being held, with massive street protests calling for a ceasefire being ignored, with hundreds of thousands of Israelis still displaced from their homes in the north and the south, with Hezbollah rockets still falling and now with the war more fully advancing into Lebanon, with a wider regional war ever a distinct and terrifying possibility, with settlers rampaging in the West Bank with impunity, with ideological zealots setting the terms of debate, with economic catastrophe as hundreds of thousands of West Bank Palestinians have endured a year with no income, and with palpable fear among Palestinian citizens of Israel.

The bankruptcy of the ideas that have prevailed this past year remain firmly in control and continue to capture the imagination of too many. And yet there are those who know that violence begets violence begets violence, and that this is how we got here, not how we get out.

I spent a day in New York City last month with four members of the Parents Circle/Families Forum, an organization made up of 700 Palestinian and Israeli families, each who have each lost a loved one in the conflict. In addition to the pain of loss they share, they also share a commitment to a rejection of the very notion of revenge and an embrace of the work of reconciliation. Four members of this group traveled to the United States for a two-week tour to help us understand our part in their shattered and unjust reality and to let us know that there is another way if we can find the courage to pursue it. That way is mutuality. It is an embrace of security, dignity and freedom for all the people of their traumatized shared homeland, Israelis and Palestinians alike, in equal measure.

Each member of this unlikely tribe has a unique story of personal loss, and as they speak, they tell of the worst day of their lives, over and over again. But there is exponential power in the fact that these stories are told in one voice. Two members visiting the U.S. are mothers, one Israeli and one Palestinian, who have lost children in the conflict and have been transformed by the deep realization that they share the same pain. One was a young man whose ten-year-old sister was killed by an Israeli border policeman and after some years of anger-fueled stone throwing as a teenager, he began to channel his trauma into the work of resisting occupation and violence via the collaborative work of justice, freedom and security through reconciliation. And one of the newest members of this work is a man whose mother, an internationally recognized Israeli peace activist, was killed in a kibbutz on October 7. He has chosen to pick up his mother’s work and devote himself to a just peace for himself and for all his neighbors, Palestinians included.

These are lone and lonely voices in a land besieged by brutality, dehumanization, and ideologies of ethnic and religious supremacy. But they are not unicorns. There are others there whose stories need to be told and whose work needs our support.

My church is preaching a sermon series reflecting on the leadership and choices of the kings of biblical Israel and Judah. Their stories are old but their inclinations to violence, their neglect of care for the poor and the widow, and their lack of concern for justice are timeless. In a recent sermon I was struck by my pastor’s observation that even those of us who have regularly engaged with the Bible all our lives don’t always know much about the kings, but we do know something of the prophets. They are, in his words, “the ones who hold the story for God.” And in times like these, as we descend ever deeper into darkness and inhumanity, they are the ones who share in the pathos of God, to borrow from rabbi Abraham Joshua Heschel. But they also show us the way out. Warmongers in the Middle East and here in the West are creating massive destruction. We too easily and readily live within the world created by their corrupted imagination. We can’t ignore them. But we don’t have to listen to them. Listen to the prophets, those who hold The Story of God’s shalom, of his kingdom of justice and peace. They are still among us. One of our responses is to make sure we’re listening to these voices, amplifying them, and following their lead.

As a Christian, over this past year, I have found myself being drawn more deeply into the life and the person and the divinity of Jesus of Nazareth. The deep love of the maligned and suffering, enemy-loving Jesus, he who was accused by the religious establishment, executed by one of the great empires of history, mocked and spit upon, all for the threat he posed to those addicted to power, control, exclusion and the violence needed to enforce it all. This is the Jesus who boldly declared liberation of the captives, vision for the blind, food for the hungry--a new kingdom of justice and mercy, of wholeness and shalom.

None of these things I believe absolve me from acting. Jesus is not my cop out, he’s my way out. What if we who seek to follow him were to repent of our propensity to violence, our fascination with the zero-sum binaries we use to create hierarchies of exclusion, and our failure to demonstrate our love for God by showing love of our neighbor? We might not solve all the problems that are destroying us but we’d at least stop contributing to them. And imagine what a more generative and healing presence in the world we would be if we joined our voices with others of different faiths and none who also believe in a world more just and whole. I would argue that the world in all its diversity and complexity needs Christians to mark this day and this moment is by taking Jesus so seriously that we start to live out his calling to be active participants in the work of justice, healing and repair and living reminders that all are made in the image of God, violence begets violence, and the simple truth of Mother Theresa who said, “If we have no peace it’s because we’ve forgotten we belong to each other.”