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

Community

Culture

Football

Idolatry

Sport

19 June 2024

5 min read

The decade that defined sport

What the sports stars of today owe to the eighties.

Simon Burton-Jones

Simon is Bishop of Tonbridge in the Diocese of Rochester. He writes regularly round social, cultural and political issues.

Maradona runs in celebration, holding a hand aloft as an England player sits dejected on the ground.

Maradona celebrates, 1986 World Cup.

Dani Yako via Wikimedia Commons

If the 1980s were your formative years as a sports fan, you will carry many images with you even today. Dennis Taylor potting the last black after midnight to beat Steve Davis. Barry McGuigan defeating Eusebio Pedrosa in the ring at Loftus Road. The races between Coe and Ovett at the Moscow Olympics. The tie break between Borg and McEnroe. Botham’s Ashes. Diego Maradona versus England at the Mexico World Cup.

You will undoubtedly have other memories, though these will have been controlled by a limited number of broadcast editors. I clearly recall watching Viv Richards’ astonishing century in one cricket World Cup final against hosts England being regularly interrupted on BBC1’s Grandstand with coverage of a routine horse race meeting. The introduction of the less fusty World of Sport on ITV was a route in for some sports that faced an implicit class bias, but it was all still far removed from the 24/7 reverencing of sport today.

The eighties was an era of transition as sport began to gain a place in our cultural consciousness. It was also a decade in which the relationship between sport and politics became cemented on paths we still walk. In Everybody Wants To Rule The World, academic and journalist Roger Domeneghetti has written an entertaining and informative book subtitled ‘Britain, Sport and the 1980s’.

In our branding of the twenties as the decade of polarisation, we forget how deeply divided Britain was in the eighties. Recent commentary on the fortieth anniversary of the miners’ strike has been a reminder of this and how violent public life proved. Football hooliganism was pervasive and after a riot at a Luton Town – Millwall game in 1985, Margaret Thatcher asked of football officials: ‘what are you going to do about it?’. In a pithy and telling response, the FA secretary Ted Croker said: ‘Not our hooligans, Prime Minister, but yours. The product of your society’. Perhaps more than any other exchange, it symbolised the braiding of sport and politics, threads that endure to this day.

The sports stars of today have become surrogate saints, held up as an inspiration for what can be achieved and frequently employed as motivational speakers.

The argument that sport and politics don’t mix has a familiar ring for people who live with the tired old trope that religion and politics don’t either, as if our experience of culture and values are sealed off from each other. Sporting boycotts in the 1980s - from Olympics to apartheid South Africa – placed athletes in the unavoidable position of having to make decisions about participation that would reflect on their values and could affect their careers; positioning that other people were spared. These were an early taste of the moral standing afforded to sportsmen and women today; a status that somehow asks more of them, perhaps because other professions have become so tarnished and mistrusted.

Domeneghetti’s book is also a sobering reminder of how ugly and careless much of our shared life was in the eighties. The Bradford City fire and Hillsborough disaster were awful losses that showed the low priority of health and safety and the culture of institutional cover up that continues to blight the nation. The author locates these failings in the wider context of disasters like Kings Cross, Piper Alpha and the Marchioness boat as part of his bid to write a social history of sport.

Yet in a sense, Domeneghetti chose arbitrary parameters. Football in particular was on the cusp of a revolution with the introduction of the Premier League in 1992. Cultural sympathy for the game was about to change with the writings of Nick Hornby in Fever Pitch and Pete Davies in All Played Out. The nasty face of football was to be transformed into a highly marketable model.

The ugliness of the era is laid bare in the prolific and casual racism, sexism and homophobia that coursed through every sport. The Windrush’s second generation broke through in the 1980s, notably in football, but was met with staggering levels of prejudice. Anyone tempted to think this has now been eradicated hasn’t spent any real time at a football ground or on social media. Women’s sport had virtually no profile in the eighties outside of tennis and athletics and as recently as 1978, Lord Denning had ruled that an eleven-year-old girl should not be allowed to play competitive football against boys the same age even though she merited a place in her team. Meanwhile, stars like Justin Fashanu, Martina Navratilova and John Curry were targeted for their sexual orientation. It remains hard for present day athletes to identify as gay, despite the rhetoric of acceptance. Sport then, as now, held up an unerring mirror to our faces.

The sports stars of today have become surrogate saints, held up as an inspiration for what can be achieved and frequently employed as motivational speakers. But there is the gloss of a hyper-individualistic, neo-liberal culture. Sports stars succeed because of a combination of innate gifting (which cannot simply be replicated) and material advantage (too many Olympic medals are still awarded to wealthy and advantaged Britons). I won because I wanted it more is a dishonest assessment of sporting success in the UK and in this way also holds up a mirror to other walks of life.

The powerful personal branding of today’s athletes in many ways have their origin in the 1980s and the way the likes of Ian Botham, Carl Lewis and John McEnroe transcended their sports. The cult of the conquering superstar is a smart diversion from the reality that money usually wins. Just look at the Premier League table.