Walking whilst ill

I’ve taken to telling passers-by when I like what they are wearing. The other day, a woman wearing a pink and grey silky dress walked towards me – I commented on its loveliness and she was delighted – such a small thing but it brought pleasure to us both.

Yesterday, I went to the British Museum. A woman sat opposite me on the tube. I noticed at first her interesting earrings, consisting of a cork like circle attached by a metal clip. She wore a forest green coat and carried a dark pink bag – the colours went together really well. The green coat fitted her snugly and was tied at the waist in a manner that suggested frenchness. Her delicately flaring and pressed jeans took my eye down to her shoes. These were platforms with a shiny, metallic looking brogue uppers. They were flamboyant after the considered restraint of the rest of the outfit. I notice that Londoners put a lot of thought into their footwear. The woman was listening to music, so I could not offer my congratulations on her choice of clothes.

I visited the British Museum to draw some artifacts. When I first came to London, I used to visit the Museum of Mankind, a treasure trove of interesting objects that expanded my ideas of what was beautiful. I particularly liked the hat made of cobwebs. The Museum is no longer, and its exhibits now reside in the British Museum. I gravitate to the galleries showing the art and craft of the Polynesians; the native Americans; the Mexicans and the Africans. The exhibits are an eclectic mix of the quotidian, there are some particularly fine baskets; and the sacred, small gods and painted symbols to ward off evil. By drawing, it makes me think about them and appreciate them more. People tend to leave me alone – the drawings are mostly inadequate scribbles in pencil.

Then I visited one of my favourite shops selling contemporary ceramics which is opposite the entrance of the British Museum. They had an exhibition of a ceramicist, Sarah Jenkins. The pots were beautiful made of thin porcelain, with a golden glaze inside. I bought one with a Wedgewood blue glaze on the outside, scratched with abstracted landscapes. It was a surprise to me that I bought it. I had to go and get a piece of cake and a cup of tea in a nearby cafe to make myself braver to make the commitment. I sometimes buy art – prints mainly and the odd ceramic – about once every two years. I have made a few mistakes, and some of my purchases, I like more than others. I find if I go to a gallery determined to buy something, then mistakes are made since money has become more important than beauty. If I pop in to a favourite gallery on the off chance, I sometimes find a piece that hits me in the solar plexis and I cannot leave the shop without it. That is what happened yesterday.

When I ask policy makers and practitioners what they would like to know about a particular intervention, they usually reply, almost as a knee jerk response, that they want to know whether it is effective or whether it works.  If I ask them what effective or ‘works’ means for their intervention, they usually are unable to answer. 

By creating a research question -probably the most difficult part of a research project and the key to knowledge development – you can direct the project and if you find an answer then it can be the most satisfying part of research since this is a partial resolution of a problem that interests you.  So a research question can suggest a method and define the problem.  A quality question indicates a deep interest and knowledge of the topic, surprising and engaging the reader. The effectiveness question does not do this, since it shows a lack of interest in the topic by choosing a generic formula that fits all social problems.  

When I worked in charitable foundations as a policy officer, I would be sent glossy reports of evaluations and invited to their launches that showed how effective the intervention of the grant holders had been.  The publications consisted of unsubstantiated claims, mostly, of an underdefined notion of ‘effectiveness’.  It used to drive me mad since I was quite interested in the problems these interventions were addressing so I would read them occasionally but there was a remarkable lack of curiosity about the clients and the problems they were facing. Reading the pamphlets, I learnt nothing about the interventions, the participants and their problems, but I did learn how fantastic the agency was and why they should be re-funded. As such, I came to regard these evaluations as part of the agencies’ fundraising efforts.  As you can imagine, I became quite cynical. 

In my last funding job, I was able to design a grants programme that attempted to support agencies to develop research questions that would help them understand something more about their interventions and so improve their offering to their clients.  Sounds sensible and easy, doesn’t it? 

It wasn’t and I lost my job.   Some of the agencies developed interventions that failed and were so trusting that they told us.  This did not go down well with the senior management at the Fund who wanted all the projects to be effective.  Never mind that failure can be a rich source of learning. In one instance, the learning from a project enabled a consultant to advise other teams from different hospitals not to go down the route she had followed to prevent HIV transmission from husbands to their pregnant wives.  Although the intervention was not successful, knowledge from it helped her and, hopefully, others to design better interventions. 

This attachment to effectiveness is prevalent amongst academics as well as practitioners.  I left the voluntary sector to pursue an academic career.  Foolishly, I imagined that academics would not fall into the effectiveness trap of using the word to cover implicit assumptions that we are all meant to understand and so do the work of the researcher by filling in the gaps for ourselves. I imagined that academics would be engaged with understanding social problems and independent of funding interests.

Recently, I have been working with a professor and an associate professor who seem happy to use the effectiveness or ‘what works’ tropes in their research questions without defining what they mean.  Therefore, it is unclear what the problems are that these interventions are addressing or even who they are for.  In their reluctance to discuss the specifics or uncertainties surrounding this population, they display a remarkable lack of interest in this social problem. 

Does our interest in effectiveness, mean that we reduce all social interventions to some form of cost/benefit analysis where both the costs and the benefits are a matter of opinion of the more powerful?  Is this form of research a product of capitalism and neoliberalism, and essentially conservative? 

I am really bad at looking after my teeth. I avoid dentists because of memories of dentistry when I was a child. The numbing effects of the anaesthetic seemed to last for days. But it has been a long time since a dentist hurt me and the effects of the numbing injection only last a couple of hours at most yet the memory remains from my childhood, making visits to the dentist fairly infrequent.

Radiotherapy seems to affect my teeth and subsequent to treatment, I have had wisdom teeth removed. My vomiting has created acid which is apparently dissolving my teeth. Yesterday I went for a check up and for some advice about intermittent toothache which I manage with painkillers. This dentist was new to me and he was lovely. He explained the problems he found in my mouth and prescribed some super toothpaste to help with the disappearing enamel. He seemed optimistic that my problems could be resolved. Best of all, he did not X-ray my mouth which I find really painful.

I cannot describe how wonderful it is to meet a competent and kind health professional. This encounter with him cheered me up no end and contributed to my well being. So much so, that I bought an ice cream and as I walked along Upper Street to the station, I licked it all up.

The other day a gardener came round – a friend of a friend – to give me some advice. The garden has deteriorated over the last couple of years as I have been unable to weed, dig out the brambles or prune the shrubs. He advised clearance and replanting with shrubs which would be more easily managed.

He identified himself as an artist who did gardening and decorating to pay the bills, as making a living from his art was too precarious. He claimed to know he would be an artist early and recounted a story of his beginnings at 5 when he drew a picture of a tree outside the school room window. I thought back to my own childhood, when at 7, I did a collage. This was a regular activity in our school art classes and normally I did as the other children did and grabbed scraps from the top of a large box, but one day I noticed some shiny and more beautiful papers at the bottom. The next time, I hunted out these papers and carefully put them together. The teachers were surprised and I remember being pleased with the results.

I have a niece who likes painting and is good at it. I remember a few years ago when I was recovering from chemotherapy and was completely bald, I stayed at my brother’s for a few days. We played a drawing game where one person was drawn by the others for 5 mins and then we moved round. The twins were about 4/5 and their older sister was about 8. One of the twins drew me in all my baldness whilst the other two gave me a full head of hair. The picture of the bald me touched me because she had properly noticed me – it felt like a loving act.

My niece is now doing a science degree at Manchester University. She and her sister are clever – she fits in a bit of painting now and again. The gardener quoted Leanora Carrington to me when she said that she does not do art, art does her, and this was how he felt. I sometimes feel the same. As a clever girl, I pursued physics (which I never understood and so found boring) at school, rather than art (considered a subject for dunces). But the urge to paint often comes back to me and I feel impelled to draw and paint – sometimes it feels as if I am giving in to fanciful pursuits when I should be concerned to secure a less precarious way of living. But art always comes back – however much I push it away to do more sensible things.

I hope my niece finds more and more time to explore her talents and not like me, spend a lifetime avoiding committing to an artistic life. Such avoidance, I find, is exhausting.

I have been thinking some more about boredom and the road to greater creativity. I am an admirer of Simone Weil. I think she is an important writer – but I don’t think I understand half of what she says, but I battle on with her. She made a comment about losing our imaginations as an important step towards God. I quite like being imaginative and I am proud of my creativity as an important part of my identity so I was disturbed by the thought.

But whilst I meditate, my mind fills with plans for the coming day, (mostly about what I am going to eat), and ambitions for the future – and I find the meditation a burden, I am bored and impatient to get on with more exciting things – I can see what she means. Others preach about living in the present – but then how do you think of the future?

Today, I went to the Lea Valley park which is a short bus ride away. It has a canal and lots of ramshackle barges, inhabited by alternative sorts. I noticed the ripening blackberries and the flowering borage or (comfrey?) and the buddleia. It is not as beautiful as Kew but it is local to me and there is plenty to see if I bother to look.

I took my paints and did an atrocious – and boring – drawing of boats. I didn’t mind that it was bad as I enjoyed doing it – may be I could treat this as a form of meditation or would it be too interesting? I do think I want to improve (is this a way of thinking about the future?) People rushed past, completing their exercises, running or on bikes, a few greeted me but most were intent on the achievement of their physical task – perhaps imagining their future selves as healthier, more beautiful and successful as I once did in my exercise phase.

I will go again to do some more dull drawings and paintings – I am attempting to ‘fail fast’. It is local and therefore to be treasured. Alongside it runs a large duel carriageway with cars rushing along, carrying people towards consumption and achievement. It also creates a barrier to entry to the park. I could hear the swish of traffic as I walked. We seem to squeeze so little beauty into our lives, such as this narrow strip of river with its wildlife areas amidst the high rises, industrial estates and roads. It is beloved of the walkers, bird watchers, rowers, bike riders, runners, bargees and sketchers – in short you and me.

How do we temper our wish for self improvement? Should we? Is self improvement the dog whistle of capitalism?

I came across this term whilst reading a book on critical realism, a form of philosophy of social and natural science. The writers suggested that one of the causes of climate change was our obsession with growth, GDP etc and that we need to challenge capitalism with its focus on competition, scarcity and expansion. Economics is in crisis as much as the climate, and the two are closely linked.

This depressed me somewhat. I could see some hopeful signs of de-carbonisation brought about by technology – such as electric cars and renewable energy – but the thought of changing our lifestyles fundamentally to engineer degrowth and to change our expectations of prosperity seems necessary but impossible. How many people would step away from the riches brought by capitalism to choose a simpler, poorer life? I am guessing not many.

In the opening up of the Covid lockdown, I see the eagerness to consume, to visit fast food joints, to buy disposable clothes and to travel to sunny destinations on the continent. No politician is pointing to these pleasures and saying we will need to give these things up if we and our children are to avoid being engulfed in floods or burnt to a cinder.

Instead, politicians big up ideas about green growth, new kinds of jobs and the benefits of technology. However, too often these initiatives are about enabling capitalism to continue and reassuring us that we will not suffer inconveniences.

During Covid we did give some of these things up – foreign travel for instance – I must say it is so much nicer walking in Kew without the constant sound of airplanes overhead. Asthma sufferers reported breathing more freely. I liked the film of wild goats roaming silent streets eating flowers in gardens, early on in the first lockdown – indeed the emergence of animals onto our empty streets was instructive as well as entertaining.

There seem to be more people on bikes round here although the traffic has quickly gone up to pre-pandemic levels. The complaints directed at councils for closing off roads to cars is perhaps indicative of the enormous task facing our leaders to persuade us that unlimited freedom to consume threatens our future as a species, never mind that of many other animals, teetering on the brink of extinction.

What would an economy committed to degrowth look like? Can the pandemic teach us something? Families spent more time together – some really liked it, but others, particularly women, found it limiting. I hope we begin to appreciate our teachers and nursery staff more.

Working from home may have encouraged greater attention to localities, back gardens, local shops. Did we work less but more productively ?- some did but others missed their friends at work and stimulating conversations. Do we need to work such long hours? Keynes suggested that 15 hours max a week should be sufficient in a technologically advanced nation – think of the energy saving of that. We could get rid of bullshit jobs – hedge fund managers? – and pay those who really contribute to society more money. Capitalism does not value those who contribute to society but rather those who create wealth. Can we do without the wealth creators to pay the salaries of the doctors, nurses and teachers?

Does capitalism use boredom as an itch to scratch? Media commentators often expressed their boredom during lockdown. Is the endless supply of diversion a problem?

I read an article recently which spoke to epistemological injustices that I have already blogged about. I am also reading about the philosophy of social science at the moment and I want to consider the notion of truth.

The authors of the paper took three examples of ‘post truth’ (I will leave aside what I think they mean by ‘post truth’) namely: creationist ideas about the origins of the earth and specifically the Creation Museum; the Flat Earth Society; and the wellness industry, specifically Goop and its followers.

The first two examples take on established truths in the natural sciences. They strike me as offering ends of arguments with no possibility of revision, i.e. God created the world and the earth is flat. Science develops through revision, not accepting the first answer as immutable, and a commitment to truth – scientists are probably more interested in the argument than the result. I wondered if creationism and the flat earth advocates have just refused to revise and resorted to dogma. Is there a worry about being ‘wrong’ ? Most scientists are pleased to discover their mistakes so that they can discard ideas that might hold them back in their pursuit of truth. What do we lose if we accept all ideas as equally true? Without being able to test assertions because everything or nothing is true, what would be the point of experiments? Does a post truth society endanger science itself? Can you test the notion of the divine creation of the world?

Would the authors become members of the society or donate to the museum? Without such a personal commitment, surely we are just patting these people on the head and allowing them a seat at the table of epistemology but essentially still not listening.

The last example is of a different nature – firstly, it is an industry, making money out of people with a chronic unexplained illness or a suspected one – is there a danger of the exploitation of our suffering? I sometimes think of it as a branch of the beauty industry. Secondly, it aims to tackle uncertainties in medicine which are considerable – unlike the established truths of the previous examples. I agree that the lived experience of illness is often ignored and not considered as a ‘truth’- despite the best efforts of patient groups. As an example, the recent UK inquiry into Endometriosis lambasted doctors’ refusal to take the pain suffered by women seriously.

But what is ‘wellness’? Carel suggests you can be well whilst being ill.

In considering my own experience, I am grateful for the cancer drugs and treatments and I have confidence in them because they are the outcomes of experiments by scientists in search of truth. But, at the same time, they have fallen short in explaining to me my chronic condition, perhaps caused by these same treatments. Scientists are not miracle workers, but their search for truth may give me and others some respite yet, if they are willing to listen.

Yesterday, I went to my first gig in many years. I hesitated about going out as I often do – it is easier to sit on my comfy sofa – but once I got on the bus I realised I was having an adventure which was delightful.

The gig was at the Kings Place, a venue new to me, in Kings Cross. The Breath is an Irish duo, consisting of a singer/songwriter and flautist and her guitarist accompanist and general side kick. I have been listening to Mark Radcliffe’s Folk Show on radio 2 for some months now and heard the Breath for the first time. This singer struck me down with her beautiful voice.

She has a voice of such delicate capabilities with a dreamy, jazz-like quality. She sang my favourite song ‘Only Stories’. I liked her best when she bellowed because she managed to combine joy and pain. I cried a bit in the darkness, she moved me so. I hope they come back to London – this was their first time.

I recently finished a PhD, it took me 8 years. At the writing up stage, I was consistently working on it for 20 hours a week as well as doing my job part time. I admired my own persistence. But since I have released myself from this duty of writing, I have unleashed a chaos of desires to achieve, which my illness has put a break on.

I have blamed my illness for my lack of motivation, but on a walk in Kew, I wondered if it was my own lack of discipline that was causing my distress. I listened to an old interview with Jimmy McGovern – a writer I admire – and he stressed persistence as a key quality in producing anything creative.

I also looked back at some old photos recording some paintings I did a few years ago. I was pleased by them and wondered why I had stopped. I remembered being bored and wanting to go on to something else more exciting – I did not persist. Another writer, this time on meditation, suggests that when you get bored, you are often entering a deeper understanding of yourself and a new level of creativity. Writing up the PhD was boring but I persisted and I was pleased in the end – it changed me.

After the end of my PhD, I had lots of dreams of doing more visual work. I bought loads of books and materials, but somehow never got started. I took my paints to Kew last Friday and did a terrible painting, but this time I will persist.

I was reading an academic article recently that considered the history of Classical Greek and Christian thought about oikonomia – a term that can be translated into ‘household management’. This was applied by the writer to modern management practice and morphed into a discussion of the moral ends of an organisation. For Aristotle and Christian writers, such as St Paul, this had become a concern for ‘profit’ in its broadest sense and an enablement of all being able to reach their personal fulfillment.

‘Profit’ was couched in the term ‘the common good’. The writer attempted to understand what was ‘good’, taking a utilitarian approach. But I wasn’t sure I understood what they meant by ‘common’. Did they mean citizens / voters – or church members – or employees in an organization? There are many cases of organizations working to the detriment of individuals to generate profit – the tobacco industry is a good example. Ethics in organizations, real or promoted, seems as much a concern today as profit and often they are linked – as in the phrase ‘the triple bottom line’.

Coincidently, I read an article by Thomas Nagel in the London Review of Books, who considered both ends and means in moral thought. The discussion about means – right or wrong action – locates our ideas about means as essentially emotional whilst the calculation as to what would bring about the most good (ends) was a rational decision making process and may involve actions harmful to the individual (and therefore morally wrong) – the use of torture is one such debate.

It struck me that ‘whistle blowing’ is an instance of an individual pointing out the immoral actions of an organization / or a state. This made me think of the idea of sacrifice, such as the real possibility of losing your job, your career, your freedom, the regard of your less brave colleagues, and some friendships too. Are whistle blowers modern day martyrs?

Nagel was trying to bring these two ways of thinking about morality together and suggested that changing thinking about ‘right’ actions affects our ideas about ‘good’ ends. He mentioned views about homosexuality as an example of this. Civil partnership can be seen as an expression of ends in a legal sense. He suggested that ideas about collective property might challenge our thinking about private property.