Monday, 27 January 2020

Speaking Up: 75 Years After Auschwitz

Yesterday, I went for a swim and a sauna. It's usually a pleasant, relaxing experience with, often, an interesting chat to someone. However, I found myself sharing the sauna with five men and another woman. There was an exchange of what you might call political banter going on. I sat and listened to many things I disagreed with. Then came 'the trouble with the National Health Service is all these f*** foreigners are coming here and using it and not paying a penny..." and  'Boris is going to get it sorted and send them all packing' and 'you'll be able to walk into a pub and not hear b*** gibberish spoken in your own country.'

The other woman piped up, 'I don't think you can say that all foreigners are bad.' I tried, 'A lot of people from other countries are on the staff of the NHS, doing much needed jobs.' But I could feel her nervousness and I knew my stomach was knotted as we listened to more diatribes about foreigners and refugees and, yes, women 'who have never had it so good.' It's not easy to stand up for your principles when you are outnumbered by people in close proximity who are loudly and forcefully shooting down what you say in a manner that feels slightly threatening. I don't think we did very well, but we did try.

Today, I've listened to the speeches by survivors of Auschwitz on the 75th anniversary of the liberation of the camp by Soviet soldiers. 1.1million Jews, Roma, Polish citizens, homosexuals and Soviet prisoners of war were horribly murdered there. As Marian Turski (a survivor) said, 'Auschwitz did not suddenly fall from the skies'. He was quoting something the Austrian President had said to him that had helped him articulate what he felt. The persecution of Jews, homosexuals, Roma and the disabled happened bit by bit, slowly, slowly, a tiny loss of freedom here (no sitting on these benches), a tiny loss of opportunity there (you have to shop after 5pm), a licence to be derogatory (well it's only them, they don't really matter, they never integrated properly). Turski  described how, as a child he observed this process take a hold until such views became part of normality for the perpetrators, the witnesses and the victims.

Eventually the European Jews were crying out for somewhere to flee to safety. Yet nearly every country either rejected them or severely limited the numbers they would accept. 'And that was the point at which Hitler knew he could build his death camps.' The world didn't really care.

Marian Turski spoke of an eleventh commandment that issues from the Shoah (Holocaust). 'Thou shalt not be indifferent.' When you hear lies, when you see governments infringe civil liberties, when you see politicians erode human rights, you must speak out. 

Another survivor, Elza Baker, a Roma, said, 'In a time when minorities have to fear again I can only hope that everyone will stand up for democracy and human rights.' Auschwitz did not fall from the skies. Something similar could happen again. Primo Levi wrote, 'This happened which means it may happen again which means it may happen somewhere in the world.' Another Holocaust begins when we turn a blind eye to the erosion of the rights of minorities, when we harden ourselves against the humanity of people who are different from us, when we denigrate groups of people as 'all corrupt' or 'all bad' and, even jokingly, scapegoat them for our own troubles.

I fear we live in changing political times. Several of the survivors alluded to this. Only last week the safeguards for child refugees in the EU Withdrawal Agreement were voted down by a majority of 342-254 in the House of Commons. This probably affects about 3,000 refugee children who need to be reunited with families in the UK. A tiny number, yet think of the unspeakable misery of separation and the damage being done to young lives. There is a list of the MPs who voted to remove these safeguards here (see bottom of article).

Currently, the Government has issued a consultation document on 'unauthorised encampments' proposing amendments to the trespass laws that will criminalise the lives of Roma, gypsies and travellers, in effect, leaving them with nowhere to live. Even the police appear to oppose the implementation of new laws saying that the current ones suffice. The Government's document can be seen  here and a Guardian article by George Monbiot explaining it more fully here. Parliamentary scrutiny has effectively been reduced by the Government's somewhat cavalier approach to committee work, its tendency to engage in secret negotiations, its tendency not to publish the detail of proposed policies or answer questions in detail and, ultimately, its enormous majority. 

Last week the Church of England bishops issued a statement about civil partnerships and marriage here. The statement makes clear the continued official position of the church which (though somewhat confused) denies the provision of rites for the blessing of civil partnerships or the marriage of same sex couples (paras.17 & 18). Although the bishops acknowledge that there is dissent within the church on the question of recognising and supporting same sex relationships, they continue to uphold as mainstream their rejection. This appears to me to be another of those 'small voices' that normalises or allows the possibility of the objectification and exclusion of a particular group of people who are spoken about, not with.

I was moved by the co-incidence of yesterday's conversation in the sauna and today's Holocaust Memorial to return to a question that has haunted me ever since I read the Diary of Anne Frank as a 10 year old. Would I have spoken up for the Jews when others were abusing them? Would I have refused to join in taunting them? Would I have endangered myself to help them? Would I have hidden anyone who was being hunted? 

I don't know. We none of us know until we are faced by an ugly situation. Judging by my reaction in the sauna, I might have tried tentatively and given up rather lamely. I can see that today, perhaps even more than in the recent past, there is a need to practise those little habits of speaking out, challenging unfounded blame, contradicting hate speech, lobbying for what you believe in, identifying and working with others who are concerned about the right of every human being to be respected, treated with dignity, freed to speak their mind and allowed go about their legitimate business and way of life.

Do not be silent when minorities are belittled or attacked.
'Thou shalt not be indifferent.'

I hope I have quoted the words of the survivors at the 75th Holocaust Memorial correctly. Some were translated by interpreters and they were written down by me at the time of hearing. I apologise if I have not got the exact words.     

Monday, 11 November 2019

To Listen is the Greater Part of Prayer

How did you learn to pray? My mother taught me. Every night, before bed, we knelt down and said 'thank yous', 'sorrys' and then there was 'please bless...Mummy, Daddy, Nana, Taid, Auntie so and so, Uncle thingumy...' It could go on for quite while.

That's not so different from a lot of adult prayer. Some of us go in for sincere, conscientious lists of people and concerns we are committed to. Others go in for the dutiful, disciplined offering of set forms of prayer that mark out the times of day and the seasons. Still others regale the Almighty with desires, believing that if we have enough faith, these desires will somehow become consonant with God's and will therefore 'come to pass' as the scriptures put it. Most of us include genuine expressions of gratitude and regret as we go along the way but a very big chunk of much prayer is either intercessory or liturgical, the former expressing desire and the latter involving the recitation of the words of scripture or a denominational text. When words fail us we have recourse to 'your will be done'. A particular dislike of mine is the pastoral conversation that is directed into prayer when things get a bit tricky; I'm suspicious that there's an unacknowledged agenda or that it's a device for exerting covert pressure to conform.

Recently re-reading a biography of Jung, I was struck by a passage in which he describes overhearing his father (a minister) praying. 'I saw how hopelessly he was entrapped by the church and its theological thinking' (p.20, Jung: A Biography, Gerhard Wehr, 2001). This gave me pause for thought. So much prayer is constrained either by our own semi-acknowledged desires and horizons or by what church tradition has told us it is acceptable to think, feel and say. Much Christian prayer seems to miss out on the truly radical aspect of relationship with the Divine which is listening - listening to ourselves to discover the truth about our innermost motives and our habitual behaviours, listening for the stirring of that which is of God within us, within others and within the political and natural events around us. This takes time, discipline, repetition and a persistent commitment to an openness of attitude that lays aside dogma and systematisation.

There are many books about this kind of listening (often called contemplation). It's an inward journey, but also a journey shaped by and seen in outward influences. Here are some questions that might prompt us to review how deeply we listen. The more profoundly we listen in everyday life, the more we increase our capacity to listen to God and vice versa. 

  • Who have you really listened to today?
  • Who has really listened to you and how did you know?
  • How often do you find yourself anticipating what's going to be said or thinking about your reply before the speaker finishes?
  • When did you last hear something that changed you?
  • When did you last stop to listen to something in the natural world?
  • What was communicated in the last memo you read?
  • How many repetitions does it take you to pick up a short tune?
  • Do you often forget or mis-hear simple instructions?
  • When did you last hear something truly unexpected?
  • Who never listens to you?
  • Who do you tend not to listen to?
  • When did you last sit in silence for 10 minutes...half an hour?      

Saturday, 19 October 2019

A Non-English Warning About the Johnson Brexit Deal

Do you support the Withdrawal Deal Boris Johnson has negotiated with the EU and believe that the Union of the four countries within the UK is secure? I would like to invite you to consider the Deal carefully from a non-English perspective and, in particular, the potential impact of imposing such a Deal, without a second referendum, on the countries of Scotland, N. Ireland and Wales.

  • It is perceived as undemocratic in Scotland where the vote was 'remain' and may quite quickly lead to the departure of Scotland from the UK. 
  • It is perceived as undemocratic in N Ireland for the same reason and draws N Ireland closer to S Ireland.
  • It means N Ireland will be treated differently from the rest of the UK.
  • It creates political tensions in N Ireland.
  • It creates new issues that may lead to complication and disruption at Welsh ports, fuelling the independence movement in Wales and changing Wales' relationship with Ireland (both countries).
  • It is predicted to lead to a 6.4% reduction in GDP (which is more than 4% greater than Teresa May's Deal here). This will impact Scotland, N Ireland and Wales heavily with the loss of industries and jobs. 

I grew up on the West coast of Wales during the period when the first Plaid Cymru MPs were elected, at the time of Treweryn (the flooding of a Welsh valley, including a village, to provide water for Liverpool) and during the time of the Investiture of the Prince of Wales. It was also the era when Cymdeithas yr Iaith (the Welsh Language Society) were at the height of their direct action campaign. However, I have never seen so many people out on the streets demonstrating in favour of Welsh independence as I have recently. The protests have not been only in the Welsh heartlands but in areas that have traditionally shown little interest in independence; they have not been widely reported by the English media. This alerts me to the fact that, in England, people may underestimate the strength of feeling that is around. People in all three Celtic nations are unhappy that their voices are seemingly disregarded. The Deal currently under consideration is, I think, likely to lead to the eventual break up of the UK or at least to many years of debate about how the Celtic nations can (or why they should not) separate from England and join the EU. There is a growing perception in Scotland and Wales that their voices are not heard and their interests are not well served by Westminster.

For this reason I ask you to support all moves to take substantially more time to formulate and scrutinise any deal and to put a choice between that deal and remaining in the EU to all four nations in a referendum. 

I often hear people say, 'Oh Scotland and, more particularly Wales, could never make a go of it on their own.' This article by Adam Price (a Plaid Cymru MP) here offers some food for thought. I had no idea that Wales is the fifth largest exporter of electricity in the world!!

Tuesday, 1 May 2018

Unlimited Well-being?

7th - 12th May is Mental Health Awareness Week. Here in Nottingham the World Health Innovation Summit is hosting an all-day event in the Market Square, SHINE. The World Health Innovation Summit is an organisation that promotes local initiatives that galvanise communities into action supporting health-care. The underlying notion is that while the health-care services are over-stretched, there is much that can be done alongside such provision by local communities. You can read about their inspiring work and join their Facebook page here

SHINE will be an opportunity for individuals and organisations working in the Nottingham area to come together to share information and ideas about what is going on across the city to prevent and alleviate mental health issues such as stress, anxiety, depression and isolation. As well as that, it promises to be a great deal of fun with the chance to try out all kinds of activities! You might enjoy a Tai Chi taster or join in a meditation, you might watch a dance or talk to an artist or poet, you might find out about the benefits of reflexology or aroma therapy. There will be stalls, speakers and activities for children. There will be a 'mass meditation' starting at 12.05.

I was recently talking to a very senior consultant physician. When he discovered that I'm training as a psychotherapist, he first of all confessed that all his training, background and instincts were 'firmly in the biological sciences'. Test out therapies and only use those that  can be scientifically and rationally proven. He then went on (uninvited and therefore the more convincing!) to say that, however, he had come to appreciate the 'talking therapies' as he put it. He even went on to cite some studies he had made that showed that they were beneficial in reducing blood pressure in patients with persistent hypertension. He was now increasingly open to careful use of therapies that complement scientifically-based western medicine. 

The great thing about the World Health Innovation Summit movement is that it seeks to do precisely that; to bring alongside standard medical, nursing and social care the resources of other approaches to wholeness and well-being. The World Health Organisation determines health on the basis of social and economic environment, the physical environment and a person's individual characteristics and behaviours. This latter category encompasses genetic, physiological, mental and spiritual factors. WHIS work by
'bringing patients, clinicians, managers, voluntary sector, education and businesses together to exchange knowledge, inspire and innovate together.' Their website states,

'Health touches every sector: Education, Transport, Food and Agriculture, Housing, Waste, Energy, Industry, Urbanization, Water, Radiation, Nutrition (WHO). In order to find solutions we need inspiration and innovation. WHIS is about each and every one of us helping to support our health services. In order to do that we need a platform for people to contribute and meet to share their knowledge and the World Health Innovation Summit (Federation) provides that platform to do this in a consolidated structured process and innovate solutions.'
Read about their purpose here

What impresses me about WHIS is its emphasis on local conversations and initiatives - so if you are in the Nottingham area, please come along and join in on 12th May. And, if not, you can find out what's going on in your area from their website. Click on WHIS Summits in the header.

See you there - I'll be in the group doing Tai Chi!

Monday, 9 April 2018

Speaking Truth to Power - Correct Me If I'm Wrong

Correct me if I'm wrong, but there seems to be an overuse of the phrase 'speaking truth to power' just lately. I've caught campaigners, journalists, Guardian readers (of whom I am one), bishops, archbishops and insufficiently intersectional feminists using it in what might be considered defensible but sloppy ways.

It's often used to mean communicating uncomfortable opinions or facts to people who are perceived as having some authority or responsibility in a situation. Very often the speaker is, themselves, in what might be perceived as a position of moderate power or authority or is speaking on behalf of others. This is the case when religious leaders confront politicians, white feminists speak for all women or investigative journalists represent the views of others.

The origin of the phrase casts it in a rather different light. In modern times, it was first recorded in 1942 by Bayard Rustin, a Quaker, who wrote that 'the primary social function of a religious society is to speak the truth to power'. He was making use of a Quaker way-of-being that reaches back at least to an eighteenth century Charge entitled 'Speaking Truth to Power'. 

The most often quoted use of the phrase is possibly in the title of a 1955 document. The American Friends Service Committee commissioned a study of international conflict. They were searching for alternatives to violence and militarism by which the American government might be advised to address 'anti American' behaviour of various kinds during the Cold War.  

'Our truth is an ancient one: that love endures and overcomes; that hatred destroys; that what is obtained by love is retained, but what is obtained by hatred proves a burden. This truth, fundamental to the position which rejects reliance on the method of war, is ultimately a religious perception, a belief that stands outside of history. Because of this we could not end this study without discussing the relationship between the politics of time with which men are daily concerned and the politics of eternity which they too easily ignore.'

Speak Truth to Power: A Quaker Search for an Alternative to Violence is a document well worth reading in full. It sets out a distinct approach to the proper relationship between faith and politics and, in doing so, defines the deep basis of the duty of speaking truth to power. Perception of truth, it claims, is a matter of belief in something that exists beyond the boundaries of history yet intimately influences our daily living.

If the idea of speaking truth to power comes from a specifically pacifist attitude, then it also grows, more generally, out of Quaker approaches to what can be known of God. Quakers seldom make pronouncements about 'truth' without much careful inner searching, a great deal of thought and an arrival at a place where their lived experience of God-speaking-to-them is such that they can do no other than speak. It is only by a disciplined and difficult process that common truths can be spoken and acknowledged. It would be rare to find Quakers speaking 'truths' they did not first try to immerse themselves in or speaking dogmatically or purely on behalf of others in a way that did not arise from their own experience. 

By all means, let public figures challenge people who hold power, let leaders campaign on behalf of disadvantaged groups. But don't devalue the notion of 'speaking truth to power' which is a rare, precious and profoundly effective thing. Foucault likens it to the ancient Greek concept of 'bold speech' and describes it this way,

 '...parrhesia is a verbal activity in which a speaker expresses his personal relationship to truth, and risks his life because he recognizes truth-telling as a duty to improve or help other people (as well as himself). In parrhesia, the speaker uses his freedom and chooses frankness instead of persuasion, truth instead of falsehood or silence, the risk of death instead of life and security, criticism instead of flattery, and moral duty instead of self-interest and moral apathy.' (The Meaning and the Evolution of the Word Parrhesia)

This is the approach of someone like the Bible's Queen Esther, Mahatma Gandhi or Nelson Mandela, living the truth they speak. There's an Indian word for it - Satyagraha - 'truth-force'. Chomsky had an interesting take on the notion when he turned it on its head and said that there was no need to speak truth to power as 'power knows the truth already and is busy concealing it'. According to Chomsky, it is the oppressed, not the oppressor that need to hear the truth because this will empower them to help themselves. As Martin Luther King famously observed, freedom is seldom, if ever, given voluntarily by the oppressor, it has to be demanded by the oppressed.

I'm not knocking leaders who have a go at pointing out the defects of political or social systems but I would prefer to call that campaigning. It would also be fair to note that all campaigns have their limits and this may be connected with the limits of embodiment and lived experience we all bring to our campaigning and speaking. Humility is called for!

'Speaking the truth to power' in its proper sense is a rare occurrence. It is something that only the deeply committed can achieve and it is something that even they will likely only be able to do two or three times in their life. When this happens, the heavens will part and something more powerful than politics or human wisdom will gather a momentum that shapes history.

Saturday, 7 April 2018

18,000 Miles Round the Globe

I've just returned from an inspiring send-off for my good friend Robert Cleave. Robert's fulfilling a long-held ambition to cycle 18,000 miles around the world. He hopes to complete the journey over the next 18 months, doing it because he loves cycling and enjoys the adventure. He's raising money for Traidcraft and Cancer Research as he goes. You can follow his epic journey on The link to his Facebook page is also there. By tonight he will be in Morocco to start the African leg of his tour.

It was threatening rain as we all arrived at Bramcote Park to say 'Godspeed'.  Among the 400+ who turned out were friends and family from all over Britain, former colleagues from Boots, Scouts and lots of folk from St Michael's Bramcote and other churches. After short speeches and a blessing by the Mayor of Broxtowe and the junior Mayor representing young people (what a great idea - well done, Broxtowe!), a ribbon was cut and Robert led a fleet of cyclists of all ages off on the symbolic first mile.

As he said himself, if you have something you've always wanted to do, don't get to the point where you can no longer do it and have to live with the regret - have a go. Even if you don't complete your challenge, you will know you tried! I can't think of anything more inspiring to do with your retirement and Robert's example has set me thinking about how I can combine some of the things I've always wanted to do into a challenging adventure for the future. We wish Robert all the best, bon voyage, safe travel, excellent health, good new friends and generous hospitality where ever he goes and a happy return with lots of stories to tell!

The other part of the challenge is of course Robert's family's. To give someone up for 18 months is quite a thing and they will be glad of your prayers, love and support.

Monday, 2 April 2018

Child Labour and Chocolate Eggs

When I was a child, Easter Monday was always the day for taking stock of the eggs sitting on top of the piano. There would usually be quite a few and you could work out how many days' supply of chocolate treats lay ahead with careful management!

The egg signified new life, nourishment, hope, the opening up of possibilities as the egg-shaped stone was rolled away from Jesus' tomb. It also meant lots of fun with your friends as you shared the generosity of aunts and uncles, next-door neighbours and grandparents.

Not all children have the same innocent relationship of fun with the chocolate Easter egg. Stop the Traffic is an Australian coalition that campaigns to improve the wellbeing of farmers at the bottom of the food chain and thereby irradicate child labour and the trafficking of children. They focus mainly on the fashion, cotton, fishing, tea and chocolate industries.

In West Africa (mainly the Ivory Coast and Ghana) a proportion of cocoa is harvested by child labour, mainly young boys who are trafficked for the purpose. 90% of the world's cocoa is grown by small-holding farmers who cannot make a living wage from selling their product to the large production companies. Stop the Traffic states that 70% of the world's cocoa comes from West Africa where there are millions of children involved in its production. Farmers are locked into a cycle that does not permit them to lift themselves and their families out of poverty and results in the use of forced child labour.

In order to be certain that your Easter egg or other chocolate product has not been produced using child labour you need to look out for 'Fair Trade', 'Cocoa Life', 'Cocoa Plan', 'Rain Forest Alliance', 'Cocoa Farming Programme' or 'UTZ Certified Cocoa' labels.

Stop the Traffic commissioned a report into the activities of six major chocolate companies. A Matter of Taste is a unique and ground-breaking piece of work looking at the steps these companies are taking toward eliminating child labour and there is detailed information to be found there.

In Britain, many of us associate the production of chocolate with Quaker firms like Cadbury, Rowntree and Fry. Since the last third of the twentieth century these companies are no longer in Quaker hands and have been taken over by some of the multinational giants. But the charitable trusts set up in conjunction with these great Quaker companies remain and are now actively working toward sustainability of the environment and the irradication of poverty and slavery. More can be gleaned about the U.K. scene from Jon Martin's article on the Quaker website, A Quick History of Chocolate and Quakerism 

As you eat your Easter eggs, check for signs they haven't been produced using child labour and that they don't contain palm oil whose production contributes to deforestation. Jon Martin also makes the point that eating recreational food with ingredients transported across the globe is not the best way to use resources or celebrate life. So perhaps a look at how locally produced treats could be incorporated in your celebrations in future might provide for a more sustainable way of marking Easter next year?

Or here's an idea for Easter Story Eggs that might be fun (though not chocolatey!) Resurrection Eggs. You could make it with cardboard eggs and real leaves instead of plastic ones.
©Creative Bible Study

Sunday, 1 April 2018

Beyond the Night Sky - Music for Stephen Hawking


Today the national living wage rises to £7.83 (if you are over 25.) If you are aged 18-20 the minimum wage applies and that's set at £5.90. Apprentices and under 16's can be paid less. These figures can be checked out on the government's information site

I'm just looking at an advert for a nursery nurse. The pay is £7,280 per annum for full time hours. It's relatively common for nursery nurses' and carers' wages to fall below the national living wage. Many under 18's do not earn the minimum wage. Some workers are not paid when they are sick as they are contracted on an hourly rate. Carers may well be required to own and run a car in order to do their job.

There is a crisis brewing. The U.K. does not have enough workers who will work for the wages offered to care for our children, elderly, and emotionally and physically vulnerable. We are seeing a rapid fall (proportional to the growth of the elderly population) in the number of people who are willing to care under the conditions created by successive government policies. These sectors are groaning under the weight of top down supervision, constant change and heavy handed policy-making.

Those who teach and care for our most precious loved ones - our youngest children and our elderly parents - provide the basic 'oil in the engine' that allows society to function. This 'oil' is the ability of ordinary people to go about their business every day knowing that their family will be cared for and taught at affordable cost by well-motivated, competent, compassionate people.

As a country we are moving to a situation where there will be a crisis of recruitment. What seems to be missing is any consistent, research-based attempt to listen to the voices of the practitioners as well as the policy makers. What research has been done to find out what carers see as priorities for their charges and for themselves as workers? What motivates someone to go into these roles and dedicate themselves to the initial and continual training required? OFSTED and the CQC ought to be commissioning research and taking a good hard look at the results to ensure that measurement systems and inspections are based on a sound understanding of the basic needs of both clients and workers. Only with the buy-in and wisdom of the carers themselves can we ensure our children, disabled and elderly are supported in the best possible quality of life. The problem with setting standards that are not shaped by those delivering the care and the teaching is that the workforce gradually becomes disillusioned, disempowered and de-motivated and it becomes increasingly difficult to attract new people into the sector and retain them after training.

But I believe there's a deeper problem. And that lies in the prevailing attitude toward any 'industry' that does not generate profit. As a society we seem to have lost the notion of vocation - the idea that we are all called to set aside sufficient resources for the care of our children, our ill, our disabled and our elderly. We ought to be doing this as a proportion of the GNP and we ought to be doing it individually in families and locally through the giving of time and voluntary support. 'Called' is perhaps a word with religious overtones to which some might object. However I think it's the right word in this context and it arises from our common humanity. The human condition is such that where there is need, we notice and respond; where this need is among our own, we cannot be unknowing. It is the the mark of the humanity of any functional social grouping that, out of its wealth, it sets aside enough for its most vulnerable members.

Historically 'care' has been the job of the family and often the women in the family. It is no great surprise that one of our lowest paid sectors arises from a trajectory of 'women's work'. The role of women in caring has transferred from the family to the churches to the social services and health care agencies without any rigorous evaluation of the skill or value intrinsic of its worth. As a society we simultaneously hold contradictory beliefs about care. On the one hand it's something anyone can do - don't parents do it all the time for their children? No special training necessary! On the other hand it's something about which lots of people say 'I couldn't do that for all the tea in China.' Too much patience needed, too many menial tasks involved! Put the two attitudes together and you have a profession that is not thought of as requiring much skill or training and where most people do not wish to think about its reality in too much detail. So the myth that there is a plentiful supply of 'angels' who will do this sort of work is perpetuated.

Perhaps as the living wage increases you might spend a moment or two thinking about how you do or could live on or below the living wage. And maybe think about jobs that are often slightly better paid - waiters, bar staff, checkout staff, cleaners, delivery personnel for example - and wonder why it is we value some of those who take on the responsibility of caring for our family members so little.   

Monday, 26 February 2018

Surviving Endometriosis - just!

The strange thing about endometriosis is that no-one talks about it (Endometriosis: quick definition). I suffered from extremely severe 'period pains' between the ages of 13 and 53. For 2-3 days a month I had excruciating abdominal pain. Sometimes it was so bad that I fainted, my extremities would be freezing cold, I would shake and vomit up to 20 times a day. Innumerable doctors shook their heads and talked about dysmenorrhoea; some were very sympathetic others were not. One actually said, 'Well you're not going to die of it.' Nothing they prescribed touched the pain very much. Although I had my suspicions about what was wrong, endometriosis was not diagnosed until I was 39 when, even though he had the results of a laproscopy in front of him, my GP expressed scepticism about whether I was really suffering from it.

At school, the attitude was, 'Pull yourself together, everybody has periods.' That was if I got as far as telling friends or teachers the real reason for my repeated bouts of 'illness'. When I was 16, due to the abdominal pain, I had my appendix out only to be told that there was nothing wrong with it.  I felt labeled as 'someone who can't cope' although, in fact, I managed to do most of the things my friends did - play in an orchestra, swim and play tennis regularly and pass enough exams to get a degree and a nursing qualification. 

In my 40's, I discovered my father's sister had had similar problems but this had never been mentioned or discussed at home.

How did I cope?

I was lucky to have parents who never made me feel guilty or inadequate because I was ill. They lived with it and saw how absolutely incapacitated I was for several days a month. Having a slightly irregular cycle meant it wasn't even possible to plan ahead with much accuracy but they put up with all this and never complained or pushed me to do things I couldn't manage. They unfailingly gave sympathetic support. This usually meant not fussing and leaving me in a quiet place, near a toilet, with plenty of vomit bowls and a hot water bottle. My mother always held out the hope the doctors would come up with a wonderful cure and this occasionally led to arguments as I got older because I increasingly came to see such hopes as futile.  

My husband was equally brilliant. During all the years I suffered, he put up with watching the person he loved in complete agony. He regularly had to cancel engagements (which he hates doing) because I was too ill to make a phone call. He negotiated the mixture of disappointment and embarrassment that met these cancellations - sometimes it was tinged with an unspoken hint, 'you're letting us down'. He drove me to occasional emergency appointments with the GP when the pain became so unbearable we wondered if something else was causing it such as an ecpotic pregnancy. He accompanied me on the inevitable infertility investigations and ate out alone in restaurants when we were on holiday.

I developed a strategy for coping. In my mid twenties I gave up searching for any kind of cure or even a firm diagnosis. I simply refused to spend any more energy thinking about being ill or visiting doctors and dealing with their scepticism. I trained myself to behave as though every period was the last time this was going to happen. As soon I was able to stand up again, I launched back into leading a normal life. I never said, 'no,' to anything because I thought I might be ill. I simply lived with the consequences of having to cancel or have a 'plan b'. I learnt that when the chips are down, there aren't many situations in which you are indispensable. Lectures can be rescheduled, friends and colleagues will help out, things can wait a day or two. 

I had brilliant managers during my nursing career. Perhaps because of their medical background, they 'got it' and it was the one time in my life when I could ring in sick, give the real reason and not be met with embarrassment or incomprehension. I am so grateful for the way they juggled rotas. However, when I was well, I was always the person who could not say 'no' if asked to do an extra shift. Later, as a parish priest and a lecturer, life was a little easier in that my diary was slightly more within my own control and most things could be rescheduled or a colleague asked to help.

Infertility can be one of the effects of endometriosis. I would have loved to have children but my husband was more ambivalent and, as getting pregnant became ever more unlikely, I simply ceased to think about it very much. I appreciate that, given my situation, we are fortunate to be people who did not feel desperate to have children. However, as I get older, I do regret that we have no immediate 'next generation' to share life with.

Are there any positives about living with endometriosis?

Almost none! However, there have been one or two useful spin-offs. I did develop a capacity for hard work. I usually seemed to get as much done as other people while missing out on 2-3 days a month. I felt pressure to be as good as I possibly could be at my job so that people would put up with my regular absences. This, of course, had both negative and positive consequences. The positive side of it was that, on the whole, I learned to plan well and get through a large workload quickly and efficiently and to maintain empathetic relationships with colleagues on whom I was more than normally dependant. I also developed a capacity to observe and listen out for pain in others. As both a nurse and a priest, this is important. Nurses have a saying, 'Pain is what the patient says it is', Samaritans talk about 'steering into distress.' Having endometriosis has helped me to understand that all expressions of pain, physical or emotional, are deserving of being taken seriously - people need support to explore their own pain and to decide for themselves what course of action they want to take. Many of the responses of our medical community and our wider society to pain are unhelpful or inadequate.

What has been most difficult about living with endometriosis?

I have struggled with feeling guilty about the strain it has put on my family and colleagues. The pain has been so bad at times that, while it lasts, I have felt I would do almost anything to end it - the only thing that has kept me going is knowing that it will end sooner or later. 

Undoubtedly one of the biggest problems has been the wall of silence surrounding, generally, anything to do with periods and, specifically, a disease that is gynaecological in nature. My family did not talk about it. We often colluded with the silence by not giving the real reason I was incapacitated. I did not even know endometriosis existed until I was well into my 20's. I grew up with a sense that maybe there was something wrong with my attitude to periods - perhaps I was making a lot of fuss about something others were able to cope with. I did not know that someone else in my family had struggled with the disease and might have had some wisdom to offer.

Even doctors collude in the silence. With two notable exceptions, mine seldom seemed to listen. As soon as I said 'trouble with periods', they would say, 'Oh it's dymenorrhoea' and write a prescription for naproxen or the pill. Some looked as though they believed you, others did not. I used to wonder how there could ever be any progress in finding treatments for a condition if medical staff routinely took so little interest in listening to a patient describe their actual symptoms. Consequently, it took me 26 years to arrive at a diagnosis and that meant I was unaware of the dangers of infertility that are associated with the disease until I was too old to do very much about it.

For the future: 

What is it that makes 'women's problems' so unacceptable that we cannot talk freely about the reality of what is happening to our bodies? If there is one thing I would change (other than not having the disease!) it is to make it absolutely acceptable for a woman to be able to  talk openly about this illness to her family, her boss, her colleagues and her doctors. Why should there be any more shame or embarrassment about saying 'I will have to cancel because my period is making me very unwell' than 'I will have to cancel because I have flu or food poisoning or a flare up of my M.S.'?

Until it is possible to talk about endometriosis openly, we will neither make all the progress we can in finding a cure for this puzzling condition nor enable women who live with it to live as openly, fully and honestly as anyone else with a debilitating, chronic illness.

Please support Endometriosis Awareness Week 2018  (3rd - 9th March). If you know anyone with the disease, listen to them, let them feel it's OK to talk about it if they want to. Educate yourself so that you understand what it is and its impact on the lives of those who suffer with it and their families. Support research if you can. Tell your story if you have any experience of it and feel you can. Especially help young people who suffer not to feel stigmatised or alone.

Tuesday, 13 February 2018

UN Women: Care in Context

Keeping Wide Horizons

'We live in a world of information overload; and this very overload is beginning to become the handmaid of injustice because it has become the motive force of selectivity and truthlessness rather than the tool of discernment. This is a time when all of us need to dig deep in order to continue to look beyond narrowing self–interests. This is a time to transcend narrowing self–understandings, to undertake creative thinking such as none of us has ever needed before.' 

Archbishop of Dublin, Cambridge, Leadership 2017