Communities of Memory; Life with Dementia

I've been reading John Swinton's book Dementia; Living in the Memories of God (Eerdmans  and SCM 2012) here. As Stanley Hauerwas says, Swinton is a premier pastoral theologian and his writings generally break new ground. In this, his latest book, he challenges as too limited current medical models for understanding dementia. What I particularly like is the way that he demonstrates how essential our thinking about what community is in shaping holistic approaches to this frightening disease. Having made the theological case for understanding that every person exists in the memory of God and is held there for all eternity, he goes on to describe the church as a 'living body of remembering friends' and says that we must 'create the types of relationships and communities that will allow us to....remember with a love that drives us into the presence of people with dementia.'


This is a major challenge to the churches and also to the way that we think about dementia and care for its sufferers as a society. Lovely as the sentiments in the book sound, I find myself wondering how effectively churches serve those who have attended for years but disappear as dementia takes hold. There is a natural fear which comes from really not understanding the disease and not feeling competent to communicate - the embarrassment when, on a Sunday morning Harry suddenly fails to recognise old friends and Betty begins to wander around during the service, interjecting with unintelligible, distressed-sounding exclamations. The monthly visit of the clergy or pastoral assistant to local nursing homes, though important in using the things like music, ritual and story that Swinton talks about, hardly seems adequate. I find myself wondering, too, how and if the NHS and social care agencies will ever be equal to the task of supporting and nursing the rising numbers of dementia sufferers. How can they do this in a society where the nuclear family is still, at least notionally, the basis of social structure? Even where people are living in or near families (and many are not) it is difficult for care givers to divide their energy between care for older family members, children and work without undermining their own strength to carry out the kind of 24 hour care, seven days a week that is required. Loneliness and isolation often overtake the care givers as much as the patient.

SCM Press here

Swinton's book is a huge challenge to our whole way of thinking about community. It forces us to think about how to generate sustained support across larger groups than the nuclear family. Just as mothers and fathers have usually formed support networks to care for the needs of very young children, so each of us, as we enter our final decades of life, will need to give attention to forming around us a community of care, knowing that some of us may need to receive more and others may give more; as with the care of children who all have different needs, this will not be a community of equally-weighted caring and this is why Swinton's starting point is so important - we are all, as we are and as we shall become, held as children of God, eternally precious. In the Kingdom of God, apparent givers become receivers and vice versa and, in fact, such distinctions and ways of thinking begin to break down.

Swinton's book is also a huge challenge to action. One of the things that people with dementia most need is time - every activity takes a great deal more time than normal, relies on the creation of mood and a good 'emotional temperature', and succeeds best where the care giver has had enough time over weeks and months to become familiar with and to the sufferer. This kind of care demands that much larger numbers of people get involved than is currently the case and that they stay committed, giving the months or years needed to remain involved with an individual and to see them through the different stages of their illness. In our transient society where so many of us are on the move so often and where everyone is 'pressed for time', the kind of environment that is needed by people with dementia is simply impossible to create and sustain without some kind of Copernican revolution in our values and ways of structuring life. A complete rethink is needed in what we value and how we show we value it. We need to provide training for volunteers and to pay those who work with dementia sufferers properly. Theirs is among the most demanding jobs I know, yet is is often done for very poor remuneration by people with little training and pitifully few resources. There is almost always a sense in nursing homes and day centres that more staff are needed and yet pressure to hurry is one of the most harmful things for those who are struggling with loss of memory, understanding and ability to do everyday tasks such as dressing and eating.

Just as the hospice movement has (with not complete success) influenced the way the whole health service thinks about terminal care, we need a fresh movement that generates new models of care for those whose memories and personalities fragment as they progress through the stages of dementia, often also suffering from other conditions which may or may not be recognised and treated. Can the churches help by beginning to explore ways for people who inhabit forgetfulness to be located in communities where they truly are not forgotten and where their continuity and memory is 'held' for them in practical as well as existential ways on a daily basis for as long as they live? 

For further information and sources of support see The Alzheimer's Society here 

Grow Up or Grow Wise?

At one level it would be impossible to disagree with Rowan Williams when he says that Christians in the USA and Britain who claim that they are persecuted should 'grow up'. It 's almost obscene to think the kinds of danger with which Christians in places like Syria, Iran and Egypt live have anything at all to do with the mild feeling of being ignored, ridiculed or disapproved that Christians in the UK sometimes experience. Of course.

The effects of the kinds of persecution Williams is thinking about don't just destroy life while they last. I met members of the Silent Church in the Czech Republic who had been imprisoned with hard labour during the 1950's. They witnessed many of their friends' deaths and if they were lucky enough to get out of prison, some had been tortured all over again in different ways in the 1970's when a fresh round of infiltration and persecution of Christians began. Their whole adult lives, almost, had been taken up with surviving persecution and their old age was dominated by memories of living with that and losing many of their comrades. Even at the end of their lives, their suffering continued because these experiences drove a wedge between their understanding of what it is to be a Christian and the vision of new young Christians, post the end of Communism. This was a further source of pain. Was there no getting away from this endless cycle of sorrow? Only an incredible, profound belief in the resurrection power of Christ could sustain them through all this. In the presence of such a belief one did, as Williams says, feel utterly humbled and chastened. Williams is right; there is nothing in the recent history of British Christianity that compares with this kind of experience, even remotely.

But I can't get away from the fact I feel an unease at William's remark. There's something here about ranking suffering, isn't there? And that can be very dangerous because it lets us off the hook as far as doing much about the sources of injustice and oppression that do occur in our own contexts in the UK. Just as we would not say to a victim of abuse, 'your abuse wasn't as bad as someone else's,' we ought to listen and take very seriously stories about the harm that comes of injustice and oppression in our own society. It seems from the context of William's words (an interview at the Edinburgh Festival with Rabbi Julia Neuberger here) that he was thinking about Western Christians who complain they are ostracised because of their beliefs or practices. I guess this means Christians feeling marginalised and attacked in a secular workplace or it could mean Christian homosexuals, lesbians, women or traditionalists who feel 'got at' because they are unacceptable in certain circles. However, some of the forces at work in such circumstances are the very same forces that we see in an infinitely stronger form in communities where unacceptability or difference is punished by violence. I am uncomfortable with Williams' remark (as it was reported) because it seems to introduce a kind of dualism where it does not belong. To take an example, women like Malala Yousafzai UN speech here, who are shot or beaten for attempting to engage in education suffer an extreme form of violence because of attitudes to female worth - but this is connected to attitudes that mark women out as second class in every society. It's no good saying that because of the degree of suffering inflicted the one has nothing to do with the other. The way to address this particular injustice, I think, is to listen and learn and to look to one another for support and solidarity across cultures. There are, I believe, common themes at play as there would also be in the cases of homophobia, prostitution, coercion of children or sectarian violence.

Malala Yousefzia  www.nepalnews.com

We can be guilty of down-playing the injustice and abuses that go on in our own communities. This is especially so if we ourselves are in the 'comfortable majority' or the position with most of the power. It's also especially so if we see the injustices around us as 'relatively mild' and so let them pass and even despise those who try to voice the problems. To dismiss the voices of those who 'make a fuss' as childish winging is to miss the point though it is, of course, taxing to take apparently smaller forms of oppression seriously when, like the former archbishop, you are in a position to witness great wrongs which sear the heart and mind.

Trees for Life

'The best time to plant a tree is twenty years ago. The second best time is now.'

www.treeaid.org.uk

One of our favourite places to visit is Thorp Perrow Arboretum here in North Yorkshire, near the beautiful Georgian market town of Bedale. Trees have always been significant for me. My father was a forester in Ghana and then Wales and my earliest walks were through coniferous forests over soft layers of fallen pine needles and spagnam moss to the open mountainside where you could pick bilberries or lie in the heather, smelling the resin and listening to the nearby trees creaking and the curlews and sky larks rising. Trees are very significant in the biblical narratives too. You could say that the story of God's dealings with the world, the very story of salvation itself, is framed by trees. In Genesis we hear about the garden in which the Lord plants 'every tree that is pleasant to the sight and good for food' as well as the two trees which come to define Adam and Eve's relationship with God - the tree of life and the tree of the knowledge of good and evil. The cross is often represented as a tree. The tree of life appears again in Revelation 22 where its leaves are 'for the healing of the nations' and its twelve fruits symbolise the passing of time. The tree straddles the river of the water of life. These are such powerful, life enhancing, sustaining images. Trees have been associated with food and refreshment, healing, wisdom, shade and fruitfulness, longevity and transformation in many cultures and none more so than the Judeo-Christian tradition. There is a hidden potency in a winter tree that gives way to vibrancy of colour and life in the spring which, in turn, bears the promise of fruitfulness to come. And the signs are that we going to have an abundance of fruit this autumn.

There is a charity called TREE AID here that works to bring life, through trees, to families in rural Africa. When trees disappear because of drought or exploitation, this is usually followed by soil erosion, crop failure and the ensuing displacement of communities. TREE AID helps villagers in Mali, Ghana, Burkina Faso and Ethiopia make the best use of trees to generate food, housing, fuel, medicine and income for health care and schooling. The wonderful thing about trees is that they are infinitely flexible in the uses to which it can be put. Since 1987 TREE AID has helped 300,000 people plant 6.5 million trees which provide an alternative to both poverty and environmental destruction. Take an example - the fruit of the Shea tree can be used to produce shea butter which is used as a cooking oil, for candle making and as a waterproof waxing on cloth or wood. It also has medicinal properties and can be used on burns, eczema and as a sun block. We might know it better as Yoruba which is used in a lot of cosmetics. One tree can bring nutrition, business and healing to a community.

An arboretum is a wonderful place in which to meditate on the wisdom, balance and healing power found in the natural world and there for the use of us all. In the Anglican communion, the fifth mark of mission is commitment 'to strive to safeguard the integrity of creation and sustain and renew the life of the earth.' Supporting the planting of trees is one way to make this more than wishful thinking.

Media Processes

There's been a lot of talk about the use of social media to bully in the last few days. Famously, Vicky Beeching and Caroline Criado-Perez have received threats and comments that are well beyond the limits of acceptability  here (examples of the offending comments are at the bottom of the article.) There was a young woman on Woman's Hour today talking about how she had been cyber-bullied by other girls to the point of becoming suicidal. To my way of thinking, there is a connected problem in the press. Media articles sometimes distort and bully. To quote the award-winning journalist Nick Davies 'Our media has become mass producers of distortion' here and often this is targeted against individuals in a personal way. 

Inaccurate reporting of the kind that gives rise to defamatory headlines was, at one time, something the victim of libel could at least dismiss as 'tomorrow's chip paper'. Untrue stories would die down and only the keen researcher would be likely to dig them up. Now, however, anything published by a journalist remains out there for good and can be picked up and go viral across the internet. Readers on every continent can see what has been written and have no way of knowing whether or not it represents the facts of the matter. Headlines that reduce complex matters to single phrases can give a completely false impression. For example, two comments from different perspectives can become a 'dispute', an individual's comment can be used to represent a whole group and an unhappy face can be used to portray anger. How can damaged - often undeservedly damaged - reputations be rebuilt?  All this can happen almost in the twinkling of an eye. One of the things that contributes to the bullying aspect of media coverage is that those who are unlucky enough to find themselves misrepresented are often too nervous of further adverse publicity to try to put their side of the story or to complain. 

How much do you believe of what you read in the press?  If you're like me, you probably read an article and think, 'well, there must be a grain of truth somewhere in this.' You possibly trust some companies and newspapers more than others. Yet Nick Davies gives one example of what can happen. In 2005 a five year old boy was reported as having been hanged from a tree. In fact he had not, but the press then printed subsequent articles repeating the story and claiming that, as a result, fear was stalking the estate where he lived. You can image the effect on his family and on community relationships. 

In his book Flat Earth News, Chatto and Windus, 2008, Nick Davies draws attention to the moral bankruptcy of parts of the British press. (He's pretty even handed in criticising across the board.) When the book was published, he claimed that, due to changes in the culture in which they work, journalists had too much space to fill and no time to put proper checks in place. With further staffing cuts the situation has undoubtedly deteriorated over the past 4-5 years. At the benign end, reporting can be sloppy with facts like names, dates, ages, times and purposes of projects simply wrong. At the malignant end, journalists resort to snooping, over dependence on anonymous speculative sources to build up stories, and even bugging, as we now know to be the case. In my own experience, a journalist has known the day I moved a computer in my office and the day I moved belongings from temporary accommodation. Being snooped on, especially in private space, is a terrifying experience which corrodes trust and is one of the more pernicious aspects of the kinds of pressure journalists bring to bear on individuals, often for unjustifiable reasons.

Cardiff University** published a report The Quality and Independence of British Journalism; Tracking the Changes over Twenty Years here in which the authors spoke to journalists about the changes in the pressures under which they worked and sampled the level of checking that went on. In the Summary (p.3), they come up with this sobering finding about re-cycled PR stories, 'Only half the stories in our press sample made any visible attempt to contextualise or verify the main source of information in the story and in less than one in five cases was this done meaningfully.' This finding is consonant with my experience. For example, on one occasion 19 different organisations published speculative stories based on one original story; only one journalist contacted me. Four were careful not to repeat anything that was speculative. Many distortions are generated at local level and then creep up the news chain and out across the internet.

Common problems that I have spotted include 

• Speculation which may be identified as such in the first round of reporting but which looks like fact when taken up and used again.
• Repetition of speculation or very few facts.
• Misleading headlines.
• Misleading photographs.
• 'X was not available for comment' without evidence that an attempt was made to contact the person named.
• Use of the technique that asks for a comment when the person commenting does not accurately know what they will be represented in the article as commenting on.
• Putting one comment alongside another to produce the appearance of a dispute.
• Intrusion into people's private lives without evidence that this serves the public interest or, sometimes, with good evidence that it does not.

One of the problems in doing anything about all this is that British journalism does not have a great track record when it comes to responding to criticism. It's largely self regulated and gives the impression of fighting hard to maintain this. Kevin Marsh, in the Guardian article quoted above, says 'Too many British newspaper journalists confuse verification with impact, independence with arrogance, the interests of the public with the basest interests of some sectors of the public.' It is very difficult to complain. Complaints have to be made within 2 months to the Press Complaints Commission but, in the first instance, the complainant must contact the editor of the newspaper. At this point it is far from clear whether the complaint is confidential and whether complaining will be prejudicial to any further stories that are written.

In my ministry I have three times witnessed families who have been driven almost to the point of madness by the intervention of journalists who have reported things which turned out to be untrue. In one instance they caused a misunderstanding between family members, in another, a community dispute which then became entrenched and, in a third case, they gave an impression that the family had asked for a public enquiry when they had not. I have sat with individuals who feel that their reputation has been suddenly and undeservedly undermined with no hope of redress. This is surely bullying.

Vicky Beeching has courageously pointed out that the only way to shame those who bully in cyberspace is to get the bullying out into the open by retweeting the messages. Not everyone agrees with this but I think the principle is right. Unless the story of defamation and bullying is told, it becomes an underground evil we all think we have no choice but to accept. We just hope it doesn't touch us and, often, we do nothing to help those it does touch. When reputations were attacked, Jesus acted in many different ways. Sometimes He remained silent, sometimes He reacted with anger (calling the religious leaders 'vipers' (John 8) was not particularly moderate), sometimes, especially in the case of others being under attack, He acted to put right the defamation, to protect, encourage and empower the individual defamed. Speaking about possible solutions to cyberspace bullying, one of the speakers on Woman's Hour today said that we need to teach our children, starting at primary school, to be kind and respectful on the internet. I think we also need to look at courses in journalism to see whether and how journalists learn to distinguish between reporting that countenances limited harm to an individual for the greater public good and the kind that does gratuitous harm to an individual for sheer impact or because the reporting is heavily biased towards one section of a society, community or situation.  

See also Regulation of the Media 

** Authors - Franklin, Lewis, Modsell, Thomas and Williams, 2006 

Politics and the Church

In the wake of Justin Welby's call to the church to put payday loan sharks out of business through the availability of Credit Unions there's been the usual round of criticism about church leaders getting involved in politics - see, especially, the Independent's editorial last Friday here. Whereas the Archbishop of Canterbury does at least seem to be trying to do something fresh and relevant, those who criticise him for doing so on the grounds that he is unelected and unrepresentative seem stuck in an old, old groove. (What about free speech, on which the press thrives?) They also overlook the fact that the Church of England has a strong claim to political relevance based on having, as it does, paid and volunteer workers in every community in the country.

But the spat between Fleet Street and Lambeth, if not unexpected or particularly illuminating, has got me wondering about models of church engagement in the political arena. The different churches and faith communities go about their political involvement in very different ways. It seems to me that the distinctively Church of England model is now actually getting in the way of effectiveness. The Church of England has 26 bishops in the House of Lords and it's mainly from them and a few other bishops that we hear - welfare benefits, loan companies, food banks, assisted dying, organ donation, the Liverpool Care Pathway, pornography - these are some of the issues bishops have spoken about in the past week or so. And of course, in the House of Lords, they get to have a vote as well as a voice. Put that alongside the average member of the public's view of the bishops' political involvement (which is that they have opposed moves towards gay marriage and been sporadic and selective in their attacks of the government's policy on welfare benefits) and you begin to see that membership of the House of Lords doesn't persuade people of the church's qualification to engage relevantly with contemporary political tides. In fact it may get in the way. 

photo www.christiantoday.com

The problem is the 'model of engagement'. Rooted very deep in Anglicanism is respect for the bishop as 'chief overseer'. But the basis on which the Church of England operates in the House of Lords and, in fact, in much wider political circles, is inappropriately reminiscent of Mediaeval barons speaking for their people or Victorian MPs representing largely voiceless and voteless constituents. We hear the voices of the few. Often those few are not (perhaps unlike the Archbishop of Canterbury on finance) anything approaching experts in the fields they venture into. They do not have a great deal of time to focus on researching the issues they speak about. Meanwhile there are many in the church beavering away at the very same issues with more knowledge and experience.

The model the Church of England works with dumbs down most of the (often more representative) lay opinion in the church. It dumbs down most of the clergy. Because it depends heavily on the interests and passions of a handful of bishops there is not a great sense of overall direction or of sustained commitment to particular issues. OK, I overstate the case a bit, but I think this is what the public sees and reacts against - a few individuals who seem largely to be ploughing their own furrows in terms of political engagement. Nothing wrong with this except that it isn't terribly effective and it will continue to give rise to the perception that the church is somehow unrepresentative and needs to 'get with the programme' to use the Prime Minister's memorable phrase. I think we hope that the church can do more than stay mildly relevant - we hope it can be prophetic and take a lead but it's been a long time since the general public have had a lot of evidence of this.

It's time to review the model and ask why it isn't working. We need more grass roots research, more grass roots voices, a more coherent strategy for engagement with public policy and law-making, a wider expert base and better support for bishops in their public square engagement. I'm not personally convinced that membership of the House of Lords is needed; it might even be one of the factors restricting the Church of England's ability to speak convincingly about social and political issues that concern us all. We need to take a good look at Anglican theology on the role of the bishop and the church's relationship to the state. 

There are other ways of engaging. Very notably and rising from a totally different ecclesial polity, there is the Quaker way. In my limited but significant experience of Quakers, decisions about the focus of political involvement arise out of core principles or 'testimonies' and are made by careful discernment by the whole community or 'meeting'. Practical involvement in issues gives rise to a voice (rather than the other way round.) Quakers tend to commit and then act persistently to make change happen rather than pronounce on what ought to be, the emphasis being on faith in action rather than words. For me, this can be demonstrated in the number of political causes I can readily call to mind in which I know Quakers to be involved - prison reform and visiting, housing, peacemaking (with representation at the United nations), reconciliation, criminal justice reform, disarmament, non violent means of change, environmental sustainability, human rights recognition. Many of these causes go right back to the roots of Quakerism and yet there are 19 contemporary projects which reflect all these areas readily available and inviting involvement on their current UK website here. An impressive record for a fairly small faith community.

I'm not implying that one approach is right and, in any case, no church or faith group can simply walk away from its structures and the ways of working that are deeply embedded in its theology. However, there is definitely scope for the Church of England seriously to address some questions.

• Does the role of bishops in the church and in parliament enable or disable political engagement?
• What is is about Anglicanism that can distinctively and powerfully contribute to the formation and critique of public policy?

My guess is that the answer does lie, as the Archbishop says, in our unique presence in each parish. I'm not convinced (and certainly the public isn't) that we are making good use of this to inform our action or our debate, primarily, because we aren't listening. And Quakers are very good at listening - to God and to people.