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

Feminism

Leading

23 October 2024

5 min read

Can Kemi really have it all?

For female experiences to mean something, we need to be part of something bigger.

Sian Brookes

Sian Brookes is studying for a Doctorate at Aberdeen University. Her research focuses on developing a theological understanding of old age. She studied English and Theology at Cambridge University.

A woman works at a laptop on a desk surrounded by picture frame.

Kemi Badenoch campaigning.

Kemibadenoch.org.uk

Apparently Kemi Badenoch is unfit for leadership due to a ‘preoccupation’ with her children. Such comments are hardly a surprise. After all, she is both a mother and a woman vying to be in a position of power. Since the beginning of time women have been mothers, but women haven’t always been in positions of power. So it is not surprising that some people have problems adjusting to the change. But it isn’t just Robert Jenrick who finds this adjustment difficult. In my experience, most women find it hard too. Becoming a mother is a beautiful but body-breaking, exhaustion-inducing and identity-questioning process. And that is just in the first few months. Add to that the expectations of also having successful careers as well, and it is no wonder we find it hard.

Kemi Badenoch’s response, naturally and rightly, was to show how capable she is to lead the Tory party alongside her maternal responsibilities, whilst challenging the view that just because she is a woman she is more responsible for her kids than a man with similar age kids would be. But her lack of acknowledgement of the hardship involved in being a mother and having a successful career does leave an awkward silence around what is an ongoing imbalance in many relationships when it comes to holding the fair share of parental, household and professional responsibilities.

This relentless pursuit of the ability of mothers to do everything else as well as being a mother says something about what we expect from women in our society. We need to prove that it is possible to be a woman and do all the things men have traditionally done. Yet sometimes I do wonder if we make it harder for ourselves. Is it our own expectations which make this thing called being a woman much harder than it needs to be?

Perhaps she is valuable not because of what she does or the choices she makes and what that says about the feminist cause, but because her worth lies elsewhere.

I’ve been blessed with the task of raising three boys, but I think about my friends who are raising little girls and the hopes they have for them. The hopes that they will grow to defy the expectations placed on them because they are female; to counter the oppression put upon them by breaking through the ceilings that may be built over them by others, to become whatever they want to be; engineers, consultant doctors, CEOs, even builders or plumbers if they so desire.

At the same time, (if the girls want them), they are expected to build families and loving safe homes. All of the things our mothers hoped for us and their mothers before them hoped for their own daughters.

Yet now, alongside those hopes for domestic fulfilment, so many other expectations have been added. Of course, the obvious solution to this, as Kemi has argued, is for men and women to share the load on both sides – to build the home and work life in a way that benefits both in the partnership. But the fact remains that relatively speedily in the course of historical development, we have come to a position where we are all expecting to have it all, all the time. And especially for our girls – we want them to be strong, powerful, successful, fruitful and productive all at once.

Now, this is not to say that we should revert to a time when only women ran the household and only men inhabited the professional domain. But sometimes perhaps it’s OK for a woman just to be a mum, if that is what she wants. She doesn’t have to also show the world she can be everything else as well. Some would criticise that decision as selling out on the relentless need to fight for equality with men. But not everything a woman does has to demonstrate some ideological end in fighting for equality, as though that is what gives her value as a woman. Perhaps she is valuable not because of what she does or the choices she makes and what that says about the feminist cause, but because her worth lies elsewhere.

Whatever we do, we do it to witness to a love, a truth which goes beyond whatever we can give to the world.

Many of the friends I spoke of earlier who have those little girls chose to have their daughters baptised as babies. This act of infant baptism puts the stake in the ground for the belief that before they could do anything, before they could prove their worth as a female member of society demonstrating all that power, strength, purpose and ability to right all the wrongs of the past, they were loved and valued beyond measure, without condition.

As a girl, and before they grow to be a woman, maybe a mother, and then potentially the leader of a political party, they are a child of a God who values them not because of what they have done or will do, but because they are His child. At the same time, this doesn’t mean we sit back and do nothing – it’s central to the Christian faith to fight injustice and overturn oppressive powers, but this is never achieved by human action alone as though the weight of the world falls on our shoulders, it is done by bearing witness to a God who has a better plan for the world and for society than we could ever dream or imagine. It is only when we realise this that the burden might be lifted from all the women fighting for all the things we are supposed to fight for.

Of my three closest friends in the church, one is (currently) a stay-at-home mum, one a doctor, one a vicar. As for myself, I am studying for a PhD in theology. We also all spend a lot of time looking after children, cooking and doing the dishes (as do our husbands). And yet, when we reflect together, these choices feel less statements of how we might be empowered or not as women, but more the result of a belief that whatever we do, we do it to witness to a love, a truth which goes beyond whatever we can give to the world. And so, we can each celebrate what we “do” because in each offering of ours can be found meaning, purpose and life beyond our own abilities, even our own individual actions. Perhaps, this is better than any kind of feminism you find around these days, because it allows us each to do the small thing in front of us without loading more on ourselves than we can bear alone. Only together, and only in knowing we are part of something bigger than ourselves, can our variety of female experiences mean something. In this way of living, being a woman feels very free indeed.