Serendipitous long johns

This week I've discovered the joys of long johns! It was a case of serendipity. I was looking for a fleece and came across some leggings, and then it occurred to me....

One of the snags of disability is you lack the normal means of exercise and therefore keeping up your circulation. And so your extremities get cold. Nowhere is this more true than going out in a wheelchair on cold days. I do have a sort of lower-body sleeping bag, cutely called a Cosy Toes. But that is not easy to get into and out of - and looks rather nursing-homey. I often go to bed with icy feet, which isn't kind for Jane - and sometimes wake me up.

Now I have a long prejudice against long johns. My lovely father used to wear old-fashioned thermal ones, you know the sort, cream-coloured, irritating to the skin and prone to going baggy at the knees. Sorry, I used to regard them as old men's underwear. Now, however, "layering" is all the trend in outdoor activities. I ordered the leggings. Very smart they were too - they just needed some surgery to make them suitable as male underpants. I tried them out one cold evening, and the result was a dream. Well, my legs weren't so cold.

So I explored further, and eureka!, discovered what I was really looking for. Really smart, full-length, denim blue, comfortable. I don't notice them when they're on, but as I sit and type my legs and feet are warm - and going outside to collect our new Motability car holds no fear. Hallelujah! I'm converted!

Talking of dying

Yesterday Jane and I went to Woodley near Reading - No, let me start one or two steps back from there. I'm a great admirer of Dr Kate Granger. She is one brave person, though she wouldn't bless me for saying so! Here's what she wrote about herself:
"I am a 31 year old Elderly Medicine Registrar working in Yorkshire in the UK. Nothing unusual about that really. But I am also a cancer patient, a terminally ill one with a very rare and aggressive form of sarcoma. On my blog I muse about current issues especially relating to end of life care, communication and patient centredness. I also write about my experiences as I approach the end of my life.

"I have written 2 books, The Other Side and The Bright Side. We sell these with all profits being donated to the Yorkshire Cancer Centre Appeal in Leeds. See my website for more details – http://www.theothersidestory.co.uk". 

I challenge you to read her latest blog post without being moved and inspired (apologies again, Kate!): Dear Cancer Part 2. Anyway it was while researching some talks that I came across her comments about the Liverpool Care Pathway, which was rubbished inter al by the Daily Mail (no surprise there!). Her comments last November in contrast to the media hysteria were unsurprisingly extremely well informed and balanced. For example, "When my time comes I really hope my care will follow the standardised LCP approach. I fully believe it improves care at the very end of life and results in more ‘good deaths’ with comfortable patients not undergoing futile painful interventions and well informed, emotionally supported relatives, making the grieving process that little bit easier." 

Sue Ryder House, Nettlebed

So that was step 1. Then Jane and I went to an MNDA tea put on by the local Sue Ryder Hospice at Nettlebed (once the home of none other than Ian Fleming) where our hostess, Lynn Brooks, mentioned a consultation afternoon being put for the Leadership Alliance for the Care of Dying People by Sue Ryder, in response to Lady Neuberger's More Care Less Pathway report which led in July to the Health Minister's scrapping the Liverpool Care Pathway and looking for an alternative approach. Was anyone interested? We were - and so we applied and got the last two places.  Step 2.

So, yesterday afternoon we drove across the Downs and along the motorway to Reading. Step 3. The Alliance was set up, I think, by a palliative care consultant in Oxford in order to produce a constructive way forward post-Neuberger, and it draws together parties from all over the health sector, from the Royal Colleges and NHS to those involved specifically in terminal care such as hospices. There were about 56 of us there on seven tables. Only a few of us were current "service users" and carers like Jane and me, though in the end all of us will be. It was an unusual experience being in a room where everyone was at ease talking about death and dying, but not a bad or morbid one - rather like the increasingly popular Death Cafés, I imagine. In fact one of the common themes that emerged from every table was the importance of communication, between the professionals and the patients (and if appropriate their families). I tend to agree with Kate Granger's ideal that a palliative care specialist should be present when someone is given a terminal diagnosis, or if not then at the next appointment. 

As a former teacher, I frankly think that the process of dying should find a place on the secondary curriculum. I'm not sure where it would fit in! Perhaps citizenship. Talking about what will happen to everyone seems a better use of time than debating the pros and cons of euthanasia, which only serves to increase fear of dying. Far better to break the taboo we nurture concerning death. Isn't time we were open about this great fact of life, rather than be scared stiff of it?

I imagine almost everyone who receives a diagnosis of a terminal or potentially terminal condition experiences some moments of fear.  I was no exception.  I was diagnosed with Motor Neurone Disease in the same year that Diane Pretty had died in the publicity of her court cases.  I was under no illusion as to what MND meant.  I knew it was life-limiting and life-ending.  In particular I had some fears about the manner of dying I could expect.  These were fuelled by the campaign surrounding such people as Ms Pretty, which portrays those with similar conditions as 'sufferers' and 'victims' and drip-feeds horror stories to the media - with the effect of exacerbating public fear.  

Don't mistake me.  MND, as a newly diagnosed friend recently observed to me, is a 'bugger', as are most neurological and terminal diseases.  I suppose, for that matter, most dying is too - which of course none of us avoid. 

In Yann Martel's remarkable novel, The Life of Pi, which I'm reading at the moment, the turning point for the 16-year old Pi Patel, alone with the terrifying Bengal tiger named in error, Richard Parker, on a lifeboat in the Pacific Ocean comes with a discovery. 
'I must say a word about fear.  It is life's only true opponent.  Only fear can defeat life.  It is a clever, treacherous adversary, how well I know.  It has no decency, respects no law or convention, shows no mercy.  It goes for your weakest spot, which it finds with unerring ease.  It begins with your mind, always….
'… Every part of you, in the manner most suited to it, falls apart.  Only your eyes work well.  They always pay proper attention to fear.
'Quickly you make rash decisions.  You dismiss your last allies: hope and trust.  There, you've defeated yourself.  Fear, which is but an impression, has triumphed over you' (chapter 56).  It's as he accepts the tiger's presence, loses his fear and starts to face it up and almost to befriend it that he discovers his ultimately successful survival strategy. 'And so it came to be: Plan Number Seven: Keep Him Alive.'

(My beef with the campaign for assisted dying/suicide is that it feeds on and fuels people's fear - our natural fear of pain, of dying, of the unknown.  We're told stories to increase our fear of the big beast, death. And that is toxic to society. We lose our trust and our hope. We run scared of dying and lose our humanity.)

The great joy for me yesterday was seeing in the flesh what the media seems to conceal rather than celebrate: the whole range of people from paramedics, nurses and doctors, to managers, befrienders and social carers whose ambition was to ensure that the journey towards death is neither solitary nor fearful. Talking can never remove the beast, but it can tame it. And that's why we should not be afraid to utter the very words, "death" and "dying". There's an excellent organisation called "Dying Matters" - no more concerned with the euthanasia debate than was yesterday's workshop, but working to break our society's unhealthy paralysing terror of death. It's neither sectarian nor political. It can be found at http://dyingmatters.org/. It seeks to promote discussion and public acceptance of dying.

This is a time of year when euphemisms such as "passing" or "becoming another star in the sky" seem particularly inappropriate. We remember those who faced the raw reality of death in war. Death is no less real in peacetime. Let's face it, not run from it. Ultimately Pi Patel survives and Richard Parker disappears, never to be seen again.


As we drove home, the wispy clouds were starting to catch pink hues from the setting sun, and it was nearly dark as we arrived home. 

That's what teachers do

"'Child,' said Aslan, 'didn't I explain to you once before that no one is ever told what would have happened?'

"'Yes, Aslan, you did,' said Lucy. 'I'm sorry. But please - '" (CSLewis, The Voyage of the Dawn Treader, p 137). Sadly I don't recall the previous occasion that Aslan has a similar conversation with Lucy. (I have a feeling it's after the sacrifice of Aslan.) Answers below, please!

OK. I admit it. It doesn't take much to make me cry. But I've just been crying. I've watching this:  http://www.youtube.com/watch?v=cWeKiZS-dxM. It's an extract from the last episode of Educating Yorkshire, the fly-on-the-wall documentary series which has just ended on Channel 4.

Jane and I made the mistake (possibly) of watching nearly the whole series yesterday. We'd watched the first episode when it was broadcast and decided to record the rest after that. So it was time to catch up. I have to say I loved it. It's all about Thornhill Community Academy in Dewsbury in West Yorkshire, but it could be in any normal school in the country. In post for two years the first-time head, Mr Mitchell, has a clear vision, a lot of energy and a great affection for his students. There's a real vibrancy about the socially and culturally mixed 11-16 school. The students are like any other cross-section of youngsters of their age - sociable, loud, fun and usually friendly. What it had in common with the last school at which I taught is that clearly for some children it was the place of greatest security in their troubled lives. Learning that some adults in life really do want the best for you and are prepared to believe in you in spite of everything was a transforming discovery for even the most "hopeless" cases. It was really impressive seeing a team of teachers and pastoral staff really united in creating a compassionate and hope-full environment for the children. It is no wonder that the production team chose to reserve the story of Musharaf's GCSE English oral ordeal to the last episode, since it was emblematic of the school's whole philosophy and practice. 

It was by no means the only moving story of the series.

There was the posse of bolshy blond Year 11s who had "failed" their GCSE Maths on their first attempt, whom Mr Steer, the deputy, allergic to practically everything except teenagers, takes on determined to get them up to a grade C. There's a typically affectionate assessment of their teacher by "Shezza" (Sheridan) who reckons he's even cleverer than that Stephen Hawking guy! When their results come through in August, she's missed by 4%, but we're told they're having continuing tuition from their teacher, all determined to achieve that crucial qualification. Can I really have heard that Mr Gove is proposing denying such children the opportunity to resit exams?
   

Then there were the awkward lads like Tom and Jack who test the authorities to the limits of their patience and resources with their disturbed behaviour and bad language. There were teenage fallings out between best friends, Safiyyah and Hadiqa. I can imagine military men and leaders of industry "standing no nonsense" with such people, quickly throwing them out on their ear, letting someone else pick up the pieces. However these are young people, adolescents, and teachers are there to educate, to bring out the adult in them - and they will spare no effort and miss no trick to achieve the best for their charges. Not that they'd claim to get it right always, but they are honest hard-working professionals whose aim is transparently the children's best. (There's a local TV interview here with Mr Mitchell.) As Miss Uren, an English teacher, says, "When you go into the teaching profession, it's not just about teaching them English, or teaching them Maths. It's about teaching them how to become young adults, how to grow up, and we teach them just as many life lessons as they learn at home. That's part of our profession. That's what we do."

I sincerely hope that Channel 4 transmits a rerun of the series soon. When they do, I urge you to watch it. I trust too that the Secretary of State and his advisers examine it, and bite their tongues before indulging the all too easy and frequent pastime of politicians and lazy journalists of slagging off the teaching profession and comprehensive schools. (It's also on 4oD.)

An unexpected by-product of watching the programmes was that I realised what a buzz I used to get from my teaching especially in the later years. Maybe distance has lent enchantment, but I don't think I've experienced anything comparable in any other job. It made wonder what if....

The challenge of helping young people steer their way through the stormy formative teen years and the reward of witnessing them make a fair fist of the journey is unlike any other. People, among them some who should know better, like to smear the teaching profession as corrupters of the youth or as work-shy stick-in-the-muds do not know what they're talking about. They should take a leaf out of Mr Jon Mitchell's book - and instead write letters of appreciation to their children's teachers and to the staff of their local schools. I can assure you Thornhill Academy is not unusual among state schools. Its staff are like the vast majority of their colleagues.

PC Plodgate

I'm listening to a fascinating conversation in our local coffee shop - I can't help it, I hasten to add, as it's being conducted in emphatic tones. The discussion concerns what's been dubbed "Plebgate".

What's interesting is that none of the participants is quite certain of the meaning of the word pleb. It is, I suspect, more familiar to those privileged enough to have received a public school and university education. Exactly what was said at those ugly gates blocking off Downing Street on Wednesday 19th September last year may never be known. One thing is clear and that is that the frustrated Andrew Mitchell did swear at the officers on duty (repeating the "f" word, so familiar from the lips of Malcolm Tucker in The Thick of It) for which he did subsequently apologise. Just as well in the light of the earlier comments of Boris, Tsar of London: "If people swear at the police, they must expect to be arrested. Not just because it's wrong to expect officers to endure profanities, but it's also because of the experience of the culprits. If people feel there are no comebacks, no boundaries and no retribution for the small stuff, then I'm afraid they will go on to commit worse crimes"! 

What is puzzling is where the offending word "pleb" popped up from. Is it in your ordinary copper's daily vocabulary, any more than it is around the table in this rather polite coffee shop? 

Last night on Radio 4, following the arraignment of the police federation representatives and the Midlands chief constables before the Commons' Home Affairs select committee, the very patrician Jacob Rees-Mogg MP declared that the police concerned ought to confess, "Mea culpa, mea culpa, mea maxima culpa" (sic - "Through my fault, my own fault, my own most grievous fault"). I'm not sure whether he expected the plebs to know what he was talking about, but he did at least reinforce the spin the opposition have been so keen to create, of a government of toffs out of touch with the majority of the population. At least Mr Mitchell avoided that and used gutter Anglo-Saxon instead. 

Personally I find it very sad when politicians undermine trust in the police, and/or vice versa. I know it's tempting to deflect blame on to others, but a cohesive society needs the mortar of trust. 

Jumping to conclusions

I was struck by an interview this morning on Radio 5 Live with Romany journalist, Jake Bowers, about the potential demonisation of the Roma community following the Greek and Irish stories of authorities taking blond children away from their families. As you can see from his picture, he himself is fair-haired and so, he said, are his children.

Jake Bowers

He recalled the old nursery song, 
"My mother said I never should
play with the gypsies in the wood
and if I did my mother said 
she'd send me out to beg my bread...", part of our historic anti-Roma culture. Certainly, traveller culture is different from the Anglo-Saxon way of life. He commented that he was one of an enormous family (17 children). Children are at the heart of gypsy families. "Why on earth would they want to abduct others?" However it is easy to assume the worst of others who are different - a trap we are prone to fall into, including me.

So I was interested to read this article by Louise Doughty in the Guardian which I came across through Twitter.
An 'angel' captured by gypsies? In it she writes about the negative assumptions that so many of us have made in the case of the four-year old "Maria" in Greece and the seven-year old in Dublin. My friend Laurie Webb who runs a B&B (www.casacristinaroandola.ro) in up-country Romania commented about it.

"Maria" and her adoptive parents

"A very good article. As I'm in everyday contact with Roma folk, I agree entirely with Louise Doughty. Yes, children in the village are often dirty but the living conditions are poor and soap is a luxury the families can't afford, but they are all loved by their families, and I rarely see a child who hasn't got a smile on their face. As for blond children, although there are none in my village, I know of two or three in nearby villages and they are the result of German genes in the Roma population from the Saxon Germans who occupied most of the villages in the area until the 1990's. The blond gene usually got into the Roma people through love affairs rather than marriage, but nevertheless it's there; so blond children do occur.

"Another possibility is that the blond children found with Roma families in Greece and Eire could have been unofficially adopted because they were the result of unwanted pregnancies in the extended family, or a close friend of the family, who had a liaison with a western European. Prostitution is all too common as a way of making money when jobs are hard to find or lowly paid if a girl/woman does find legitimate work. I've been approached three times while sitting alone in my car waiting for a friend by girls asking me if I want sex."

Racist assumptions are prevalent even in the bastion of Liberté and Fraternité that is France, as well as in our own country among whose most prized possessions is tolerance. It seems they lie only just below the surface. I suspect that excising them requires more than legislation, rather a divine transformation. In the meantime we can at least police our public consciousness in the way that Ms Doughty has done in this case.

Casa Cristina, Roandola, Romania

The Paralympian and the Professor

I was very glad to read in this article, Tanni Grey-Thompson and Stephen Hawking, that the professor's advocacy of assisted suicide has been intelligently challenged.  Having ALS/MND like him, I'd been disappointed to hear he'd changed his mind about it, and had thought I should write some rebuttal. However I suspect her comment carries more weight and certainly will be more noticed.

One hears all too often the "I'd put my pet out of its misery" comparison propounded by the pro-euthanasia lobby, as an example of compassion. In fact, as Dame Tanni points out, it's all too likely to be the reverse, an example of objectification. Our dog, Jess, whom we like very much, is in her sixteenth year now. Reflecting on our decision to have her put down, whenever we'll choose to make it, I reckon it will based on factors such as her becoming incontinent and incurring increasing vets' bills and probably ceasing to give us pleasure. Those are all issues to do with us and our feelings and convenience and wallets. The dog has become an object - which, to be blunt, is the relation nearly every pet has towards its owner. Human beings are different.

Dame Tanni in her racing days

I suppose a physicist may be forgiven for regarding his body as no more than a sophisticated machine or computer, to switched off and scrapped when it goes wrong or no longer serves a useful purpose. But it appears that an athlete knows better.

Human beings are not merely animals or machines. They are subjects, not objects.

"So why not allow them to choose the time of their death?" I've been asked. "Why not let them say, 'I've had enough. I want to end it all'?" I hear that question, but the professor's comparison and the paralympian's answer provide part of the answer: it opens the way to the reduction of life to something we own rather than something of which we are a part. It pushes the door ajar for others putting pressure on us to euthanise ourselves, when we get messy to care for, expensive to treat, and not good company. When that becomes the way we think about ourselves then we have lost sight of the fact the life is our greatest gift, "from life's first cry to death's final breath".

(Do read Dame Tanni's article in which she also writes about Lord Falconer's approaching House of Lords' bill, his latest attempt to legalise assisted suicide, and if you have a tame peer you might write to her or him to say what you think of it.)

A dose of our own medicine

How dare she? What right has a foreigner, a Brazilian woman, to come and comment adversely on our government's policies? As The Daily Mail headlines said, "Tory fury at 'loopy Brazilian leftie' United Nations official who launched 'political' attack on government welfare reforms

• • Raquel Rolnik was sent to assess impact of changes to housing benefit
• • She said that so-called 'Bedroom Tax' is a breach of human rights
• • Furious Tory party chairman Grant Shapps slams 'outrageous' attack
• • UN Secretary General Ban Ki-moon urged to launch an urgent inquiry". It is outrageous, isn't it - that we should be on the receiving end of what's our prerogative: pontificating on how others should run their countries?

If Ms Rolnik, the UN's special rapporteur on housing, has done nothing else with her considered initial comments on the effects the "spare room subsidy" she has at least given us a taste of our own medicine. As a nation we have an ingrained habit of condemning others, for example, for their "undemocratic" political systems or their human rights abuses. What we fail to do is to consider the way our interfering opinions are received emotionally. Maybe that's the reason why we're so often ignored - because of our "outrageous attacks" on them.  

In fact, should you care to read what Ms Rolnik really said and thought, look at her interview in the Guardian here. It's clear she's neither loopy nor out on a limb.

Photo from Martin Hunter/Guardian

"Rolnik, a former urban planning minister in Brazil, said Britain's previously good record on housing was being eroded by a failure to provide sufficient quantities of affordable social housing, and more recently by the impact of welfare reform.

"After speaking to dozens of council house tenants in Britain during her visit over the past fortnight, Rolnik said she was particularly concerned by the impact of bedroom tax, officially known as the new spare room subsidy. The policy was introduced by the government in April, and is designed to charge tenants extra for under-occupying homes that are supposedly too large for them.

"Rolnik said she was disturbed by the extent of unhappiness caused by the bedroom tax and struck by how heavily this policy was affecting 'the most vulnerable, the most fragile, the people who are on the fringes of coping with everyday life'."

Maybe we should be less hasty in sorting out other people's business - if we are so slow to accept the criticism of others. And wouldn't it be nice if we - and our politicians - led the way in good manners?