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

Climate

Comment

Politics

27 November 2024

7 min read

Neighbours, nimbys, and politician power plays

Is there a politics that takes both love of the land and climate concerns seriously?

Joel Pierce

Joel Pierce is the administrator of Christ's College, University of Aberdeen. He has recently published his first book.

A sign protesting a proposed wind farm stands on flat moorland.

A Scottish wind farm protest sign.

Richard Webb, Wikimedia Commons.

It was easy to forget the fury of the past few winters in the gentle light of the golden autumn which enveloped our corner of rural Aberdeenshire over the past month. The scars Storm Arwen tore through the landscape three years ago, toppling whole hillsides of trees, and the flood-soaked fields of last winter were hard to conjure when faced with the thousand colours that painted the landscape. The smoky green of pine forests in twilight, the shocking scarlet of apples my daughters picked from our neighbour’s tree, the little violet fireworks of elderberry clusters hanging above the path to our house, these chased away worries about the future and the past and demanding attention to the present. Amid this array, it was easy to see why Queen Victoria chose our corner of Scotland for her rural retreat over a century and a half ago. The changing of the season has something of the eternal, sacred, and inviolable in it. “Let the field be joyful and all that is therein; then shall all the trees of the wood rejoice,” sang the ancient Psalmist. Surely, if ever a land was obedient to this command, it was our valley’s, this October. Surely too, it is our duty to preserve it so that it can sing out for a thousand more such autumns?

This drive to preserve is evident in the signs that appear regularly on fences as you drive through our valley. “STOP MONSTER PYLONS” and “NO WINDFARM ON HILL OF FARE” they say in capital letters large enough to communicate their creators’ anger. Our valley, which connects the Highlands to the sea, is prime real estate for the sorts of development necessary to transform the UK economy, which still gets 77 per cent of its energy from burning fossil fuels, into one built on renewable energy. Our hills are ideal for turbines and our land must be crossed if transmission lines are to carry electricity from wind farms in the north to population centres like Edinburgh, Glasgow, Manchester, and London. To many of my neighbours this sort of construction amounts to an industrialisation of the countryside, an irreversible scarring of pristine land in service of interests far away which care little for them. This view is common enough that almost all of the local village councils have expressed opposition to the developments. When my neighbours are characterised by senior government ministers as “the blockers, the delayers, the obstructionists”, I suspect it only hardens their resolve.

It is not hard to imagine Adam the gardener or Abel the shepherd attending to their land and animals with similar care to that of my neighbours.

Sometimes I wonder if what politicians have in mind when they think of my neighbours are the sorts of toffs featured in Rivals for whom the countryside is a playground of upper-class indulgence. I am not rich. Neither are most of my immediate neighbours, many of whom rely on waiting tables at the local farm shop or cleaning holiday lets to make ends meet. My understanding is that most of the local farmers consider themselves lucky if they turn any profit at all from their long and exhausting hours. Every year we wonder if there will be enough pupils to keep our local primary school open. Every winter we prepare for the inevitable interruptions caused by power cuts, school closures, and unplowed roads.

If I had to guess at what keeps my neighbours here it is the land itself, watching and admiring it, caring for it, aligning the rhythms of their life to it. Autumn can be wonderful, but so too is spring. I drive to work past newborn lambs trying out their stilt-like legs, anticipate the sudden return of house martins to their nests under our eves, and enjoy weekend walks up the hillsides amid the sun-yellow mazes of coconut-scented gorse bushes. Each season land presents itself to us, demands our attention, calls for our admiration.

In the two creation stories of Genesis, what it is to be human is to be made in the image of God and to be given the task of tilling and keeping the land, respectively. A way of reading these together is that humans are to be priests to creation, recognising and praising its beauty and caring for it in a way which reflects God’s love for it. In my last article for Seen & Unseen, I discussed philosopher Alasdair MacIntyre’s concept of practices and how the human activities he identifies as practices can order and give meaning to our lives and communities. Another way of thinking about these practices is that they are all, in some way, an expression of this original edenic imperative, to see, to respond to, and to care for God’s creation. If this is true of any practice, it is perhaps most transparent in rural ones. It is not hard to imagine Adam the gardener or Abel the shepherd attending to their land and animals with similar care to that of my neighbours.

The practices we engage in have a way of becoming enmeshed with our identity in such a manner that it can be hard to imagine ourselves without them. That is why, I believe, opposition to wind farms and pylons runs so deep here, and why, as geographer Patrick Devine-Wright has demonstrated, attempts to offset the financial downsides of developments through local grant programmes and other compensation do very little to swing public opinion in favour of development. As he demonstrates, at the root of such opposition is an affective attachment to the land, one that money cannot buy away and which resists even the most well-reasoned arguments which attempt to ignore it.

And yet, I know, my neighbours know, that all is not well with the land. Although we draw sizable crowds on Easter and Christmas, the most packed I’ve ever seen our parish church was when a locally born climate scientist came to present his research on Antarctica. He walked us through what it is like to live there, how scientists survive the winters, and what they eat, but all anyone was interested in the Q&A that followed is what can be done about climate change. It is hard to ignore it. It is there in the good and the bad: in the pleasant, nearly tropical breeze that ushered my children from house to house on Halloween; in a mild winter making ticks and Lyme’s disease a regular visitor; and in the onslaught of storms felling fifty year old forests in a single night and cutting road and railway connections to the rest of Britain for days on end. If we are to keep these changes from becoming more extreme, if we are going to bequeath to our grandchildren a countryside with the beauties admired by Queen Victoria and countless others, we need to slow this change. We need to move away from fossil fuels and to renewably generated electricity and given that, as I said above, 77 per cent of our energy is still made by burning carbon, we need to produce not just a little more electricity, but a lot. The answer to the oft repeated question, “Wouldn’t these be better, if they were built somewhere else?” is that, yes, they will need to be built somewhere else and here, and in many other places, if we are going to get anywhere close to a carbon-free future.

The land will be changed either way. Our choice is some scarring now, or a terminal decline later.

What might a politics look like that both took my neighbours’ attachment to the land and these realities seriously? What it shouldn’t be is one that castigates my neighbours for that attachment. That only feeds suspicions that what is really at play is an exploitation of the countryside to feed the excesses of the cities. Such exploitation runs deep in the folk memory of Scotland. The Clearances only lightly touched our valley, but a little travel here or there takes one by abandoned villages. Those who resisted then, clinging tightly to their land, also might have been called blockers, delayers, and obstructionists by modernising absentee landlords the sitting rooms of their Edinburgh townhouses, intent on replacing them with more profitable sheep.

However, the possibility exists for drawing my neighbours’ attachment to the land into the conversation about why these developments are needed. The land, the planet, is sick, and sometimes the scars of a necessary surgery are a price worth paying for survival. The alternative to roads rising up our hills to turbines and to transmission lines cutting through now fertile fields is a future of longer droughts, hotter heat waves, and more extreme storms, bringing with them infertile fields, forest fires, and landslides. The land will be changed either way. Our choice is some scarring now, or a terminal decline later.

But for such a rhetoric to work, politicians need to be serious about everyone bearing someone of the burden of climate solutions, both here in the UK and across the world. It can be tempting to give up hope in this regard. More than one article about our area has cited farmers complaining about how what we do won’t really matter anyway since China and India will burn away any positive effects of renewables here. But there are problems closer to home too. When UK governments and traders gush about the possibilities of new, power-hungry technologies like AI and cryptocurrency it can give any discussion of net-zero an air of unreality. Turbines and transmission lines can be part of caring for the land and can be shown to be in continuity with those other practices of care, but if other changes aren’t made, they will be as useful as a keyhole surgery on a patient who is bleeding out.