Monday, 22 April 2013

Spring hopes

Woke up this morning to hear a cheerful dawn chorus, notably blackbirds, with robins and pigeons in the background. Our small garden isn't a great wildlife haven but it's nice to be reminded that spring has arrived. In fact we were at a young friend's wedding in Oxford on Saturday, bathed in sunshine on the banks of the Cherwell river. It is true that spring is not as advanced this year as sometime, but I gather that fruit-farmers regard it as good news and anticipate good crops - assuming the bees survive the neonicotinoids. Certainly it seems to be a good year
The bride's mother embracing Jane
for primroses and the daffodils and narcissi in our garden. 

Contra yesterday's Countryfile on BBC1. Usually it's Tom Heap who specialises in doom and gloom, and, if we've recorded it,  through whose Cassandra-like reports we tend to fast-forward. However, yesterday it was the normally sanguine farmer Adam Hanson who was bemoaning the weather. Fair enough, he looked like losing his field of over-wintering oil-seed rape, but it won't actually ruin him. He had the gall to describe it as "a disaster" (originally a cosmic event of the destruction of a star). For one thing in our climate nature has a way of compensating - think of last year's transition from drought to flood. For another, it won't actually render him destitute. And for a third, did he not watch the wonderful programme also by the BBC, The Toughest Place to be a Farmer, in which Devon dairy farmer, Richard Gibson, went to work with a Samburu farmer herding cattle in the desolate northern part of Kenya?

As the write-up said,  
BBC photo
"British farmers have suffered from low milk prices and squeezed margins but it is nothing compared to the struggles of Richard's host, village elder Lemerigichen. In recent years drought has decimated the herds in this region, forcing many Samburu off their land and into the poverty of local towns. Richard launches himself into an alien lifestyle - sleeping rough in the wilderness, drinking cow's blood and digging and digging to find water. The two men form a touching bond through the love of their animals and the basic drive to support their families, whilst Richard gains an insight into what it is like to tend a herd when surrounded by lions, leopards and hyenas." In producer, Hannah Griffiths' story of meeting Lemerigichen, she wrote, "he’d lost cattle to drought, his brother to tribal warfare and a child to illness. He’d fought bloody battles to protect his herd, gone for days without food and water in times of drought and suffered prejudice and abuse when he’d gingerly ventured 200 miles to the city to find paid work. Yet he never gave up."  

Don't mistake me. I do not belittle the reverses that farmers have suffered this year, least of all the tragic loss of livestock that many hill-farmers have sustained. The sight of mounds of sheep carcases waiting to be disposed of from the Welsh border farm was shocking and distressing, and must have been devastating for the farmer, Errol Morris, whom we saw dragging yet another two of his decimated flock across the snow. It must take real courage to pick oneself from yet another reverse inflicted by the weather or by disease, and like Lemerigichen and Errol, never to give up. It's the farmer's territory, fate and gift. I trust and believe that better is to come. I hope so.

Friday, 19 April 2013

"Untouchable" - an antidote to self-pity

I have just sent this review off to our PMA/PLS newsletter; so if you normally read that, don't read on!
Our friends, Mandy and Charles, lent us the DVD of Untouchable (originally Les Intouchables, in French), saying they thought we'd enjoy it. We watched it last night with two very good friends. What a good evening, sharing Masterchef-winning food and a rich red Spanish wine. I wouldn't say I wet myself, except with tears of uncontained laughter down my face. It's an excellent film and a refreshingly sane view of disability, and Steve and Bev are such great fun.

We’ve just watched Untouchable for the second time.  It had me helpless with laughter on occasions – which is remarkable as one of the two main characters is a sad quadriplegic widower and the other is a fostered alienated gang-member from the Paris suburbs.  As the French title implies, both are examples of society’s outsiders.  They both are “untouchable”.  The film is based on the true story of Philippe Pozzo di Borgo (“Philippe”) and his carer, Abdel Sellou (“Driss”).

There are so many memorable scenes, it’s hard to pick out highlights.  It starts with a hilarious car chase through Paris at night, and then we see how the partnership began, with Driss simply looking for evidence for his job-seekers’ benefit.  His total unsuitability appeals to Philippe, a multi-millionaire disabled in a paragliding fall, who clearly and unsurprisingly is a difficult client.  There follows an unsentimental and funny induction for Driss into the business of caring, from exercises to compression stockings, from showering to evacuating bowels! 

Meanwhile you watch how their differing cultures and personalities (though they are both strong) enrich and change the other, and how in a sense they redeem each other’s hopeless lives.  I don’t want to give more of the plot away, but there are two bits of dialogue which remain with me.  One is when Philippe is being warned off Driss by his lawyer-friend who has “made enquiries” into his dubious past of petty crime.  “These street guys have no pity.”  Philippe replies, “That’s it exactly.  That’s what I want.  No pity.”  The other is near the end when Driss, reemployed after being sent to sort his cousin out, has driven Philippe to the seaside to a smart hotel, and is shaving off his beard – he’s “let himself go” in Driss’s absence – .  Philippe says, “A quick cut would settle it.”  Driss is unmoved, just replying, “You’re in great shape.  I love it.”  There follows a great scene in which he experiments with various styles of moustache, and then comes the film’s dénouement, which I won’t divulge.  What Driss learns for himself and then insists for Philippe is that we are not fated to be victims. 

I do think it’s the most positive and affirming film about disability I’ve watched, and for me has been a great antidote to self-pity.  It’s beautiful, gritty and funny, with lots of witty dialogue.  I hope you enjoy it as much as I did.

It's sad, I feel, that all of us, however disabled, do not reject victimhood, and insist on life even in the minutiae of existence. After his conversation about pity, Philippe goes on to say, "True, he (Driss) isn't compassionate for me. But he's strong, with arms and legs. His brain works; he's healthy. So, for the rest, given my 'state', as you call it, his background and so on, I don't give a shit." It strikes me this is a different way of looking at compassion from that bandied around so freely in the media and among the mass of phoners-in to radio shows. Driss does not show the sentimental "I feel so sorry for you" mentality which so often passes for "compassion". That is not what Philippe is looking for or needs. He needs pragmatic compassion, which is the word Driss adopts to describe himself, pragmatique. That is true compassion, standing with someone, through thick and thin, and doing practically all you can to enhance their life. It seems clear that we're in for another round of pro-euthanasia campaigning with Paul Lamb's identifying himself as the late Tony Nicklinson's unnamed co-litigant this week and Lord Falconer limbering up for another attempted round of legislation in the Lords. Watch out for that wishy-washy sentimentalised use of the C word! It's not true compassion. It's a substitute emotion, not the real thing. In occupied Jersey during the war, they used to grind up lupin seeds to make ersatz coffee. Well, beware of ersatz compassion. Watch Untouchable to see what true caring really looks like, how gritty and how positive it is.

Saturday, 13 April 2013

Readjusting perspectives on disease and death

I enjoyed this picture which I saw on Facebook this week. 

Talking of which there was a very counterintuitive blog from Dr Kate Granger, the young elderly medicine specialist who has a rare aggressive form of terminal cancer. I listened to an interview with her by Stephen Nolan on Radio 5 a couple of weeks ago. She really is a remarkable and winsome character. Her post on Monday was entitled "Is cancer inherently evil? I think not...".

She wrote: "On our DSRCT (her form of cancer) Facebook page there are several patients and parents of patients who post regularly about how they are going about 'beating the tumour' or 'conquering the beast' afraid 'to give up the fight'. The treatments in the US are particularly barbaric with multiple intensive chemotherapy sessions, frequent surgery, radiotherapy and trials of newer treatments. It is as though people are expressing their anger and grief about the situation by blaming the cancer itself. I find this hard to do myself. This is going to sound really strange but I quite admire my cancer. It’s a clever entity that has fooled my body conning the usual systems that living organisms have to suppress tumour growth. When I look at histology slides of DSRCT I cannot help feeling it is somehow beautiful. Maybe I’m just weird!

"However it does raise the point that cancers originate from within us as human beings and therefore by referring to them as evil do we think as ourselves as evil? I think not. I think of my cancer as a part of me and it is unfortunate it has happened to me at a young age, but I cannot change this so acceptance and living as well as I can for as long as I can is definitely going to be my game plan, rather than waging a holy war…".

I do, by the way, recommend her whole blog,, which is quite the most insightful and paradoxically beautiful writing I have come across on a subject which usually makes for rather grim reading. She didn't profess to a particular faith when Stephen Nolan asked her about life after death, though she admitted to believing that there is something "more than this" - perhaps partly from her experience of palliative medicine.

At the other end of life, and very much from within a faith tradition, a friend drew my attention to this moving story from Italy, Goodbye for young mother who died for her unborn child. It comes from June last year and concerns a young couple, Chiara and Enrico Petrillo, who had lost two babies with birth defects. "In 2010, Chiara became pregnant for the third time, and according to doctors the child was developing normally. However, Chiara was diagnosed with an aggressive form of cancer and was advised to begin receiving treatment that would have posed a risk to her pregnancy.

"Chiara decided to protect the baby – named Francisco –  and opted to forgo treatment until after his birth, which took place on May 30, 2011." She survived a year.

Enrico, the boy's father, is quoted as saying, when his son grows up, he will tell him “how beautiful it is to let oneself be loved by God, because if you feel loved you can do anything,” and this is “the most important thing in life: to let yourself be loved in order to love and die happy.”

“I will tell him that this is what his mother, Chiara, did. She allowed herself to be loved, and in a certain sense, I think she loved everyone in this way. I feel her more alive than ever. To be able to see her die happy was to me a challenge to death.”

Monday, 8 April 2013

Squeezing the PIPs

Well, today sees the beginning of DLAs (Disability Living Allowances) being replaced by PIPs (Personal Independence Payments), the moment that disabled people on the whole have been dreading, largely because we're entering unknown territory. To be frank, none of us believe that it is not a cost-cutting exercise. We suspect that the PIP assessors will have been told to be "rigorous" (wink, wink, know what I mean?) and even given reduction targets to aim at. That impression isn't helped by reports that George Osborne refused to face Baroness Tanni Grey-Thompson, the disabled Paralympian, on TV (News report).

(Stop press: Just heard that Margaret Thatcher has died. Her PA who used to live in Stanford was an equally redoubtable woman. She found the young vicar somewhat tiresome but tolerable.)

I have just completed a survey for the MND Association which was asking about how we'd been looked after from before diagnosis and how we'd like to be cared for until we die. It occurs to me that this is at least one disability which usually is so rapidly changing that PIP assessors could no more keep up with it than the hard-pressed health and social care services. You see my brand of MND, Primary Lateral Sclerosis, is astonishingly unusual. It's over ten years since I received my diagnosis. The average life expectancy for MND patients from diagnosis is 14 months, i.e. from the time the doctor tells you what's wrong you're on this dizzying helter-skelter of losing your abilities until you die. The great thing about Disability Living Allowance was that assessing yourself with your doctor's advice you got access to a non-means-tested benefit quite straightforwardly. It was quite early on that I couldn't walk unaided, even with a stick. So I receive the highest mobility allowance, which enables us to lease a bigger car which I can get into and out of and we can fit my disability equipment in. It has considerably enhanced my quality of life.

Now imagine someone with a more normal rapid form of the disease. She's diagnosed. The PIP assessor comes round and our patient is still mobile and able to function reasonably at home, but within weeks she's losing her mobility and having falls round the house. Will the PIP fellow drop everything and come and reassess her? What do you think? Will he take her GP's or specialist's word for it? What do you think? On the present performance of assessors such as ATOS (the American multinational IT giant subcontracted by the government to assess suitability to work), it appears that on principle they discount the opinion of those who know the patient and the condition best. (See the Parliamentary Debate). As it is, I have had friends whose motability vehicles have arrived too late, and whose last months of life have been rendered harder than they were already by the slow delivery of service. Many of us fear that with the introduction of new, improved and supposedly more "flexible" system, even more will lose the crumbs of comfort to which they might have had access. And of course MND is not the only condition that involves rapid degeneration.

One after-thought: the disabled are often painted in the media and by ministers as "on the cadge". Of course you may be able to track down one rogue in a thousand. But the 999 would far rather be fit and healthy, able to live a healthy life and be able, like the Chancellor of the Exchequer, to park in disabled bays illicitly. By contrast, I know one driver with a disabled passenger who will actually refrain from using a blue badge, if the passenger is not disembarking. Integrity is not unknown among the disabled community. And what strange official mind dismisses the professional expertise of those who know best? Well, PIPs roll out in Oxfordshire in June. Perhaps then I'll be saying, "I told you so," - or will it be, "I was wrong"? It would be nice if it were the latter.

Wednesday, 3 April 2013

"Vested interests"

According to The Independent George Osborne, Chancellor of the Exchequer, "was also fiercely critical of churches and charities which have opposed the Government's welfare cuts, describing them as simply 'vested interests' reacting with 'depressingly predictable outrage' to necessary change", in a speech staged a Morrison's distribution depot in Kent yesterday. The board in front of his lectern read, "For hardworking (sic) people". I'm sure his English teacher at Barnes Boys' Secondary Modern would have taught him that composite adjectives should be hyphenated, not to mention Gradgrind Gove or Bruiser Boris. However, far more importantly, he'd surely have heard in his youth the words of the prophet: 

"Woe to those who decree iniquitous decrees,
    and the writers who keep writing oppression,
 to turn aside the needy from justice
    and to rob the poor of my people of their right,
that widows may be their spoil,
    and that they may make the fatherless their prey!" (Isaiah)

That sort of "outrage" is the stuff of true religion. "Predictable", maybe; "depressing", indeed. But it's what church and synagogue leaders should be saying. 

What is very curious, to my mind, is his description of churches and charities as "vested interests". After all, if the welfare state is as inflated as he seems to believe, the charity sector should have less to do rather than more. Trimming the welfare state does not create more income for the charity sector. It simply creates more demand for the sector whose resources are squeezed as a result of cut-backs. Charities were predictably among the first candidates for central and local government "economies", on the specious grounds that they were "non-essential". That might have been so in a minority of cases, such as the Great Snoring Lace Making and Limbo Dancing Club, but the majority serve real needs.

So, what exactly did the millionaire Irishman mean by describing churches and charities in that loaded fashion? Primarily one would guess that his faceless speech-writer was fishing for an emotive phrase to dismiss the considered and evidence-based criticisms of those who are nearest to the casualties of government policies. There's no doubt that the nationwide networks of churches and charities are far nearer to the ground than Whitehall speech-writers and politicians. It seems to be lazy pejorative rhetoric. However it's worse than that, because it's actually nonsense. What the Chancellor is not gracious enough to admit is that he will be relying on those very "vested interests" to be the first responders, paramedics and emergency wards for meeting the needs of the casualties of his "necessary change". That's why those "vested interests" have been setting up so many food banks and why homelessness charities are busier than they have ever been, with less funding. It's why medical charities are ever more called on to give the support previously provided by the NHS. It seems the only vested interest that churches and charities have is as providers. 

It's true enough that's what they are there for. But that is not what Mr Osborne was saying. Otherwise he would no doubt have been thanking them - and even resourcing them. The truth is equally that they are there to speak for the needy, the poor, the widows and the fatherless. They are there to speak against oppression and to campaign for justice. 

I'm not here writing about the rights and wrongs of government economic and welfare policy. I don't pretend to have a clue about politicians' true motivations and intentions. But to rubbish those who are raising legitimate concerns as having "depressingly predictable outrage" is to descend to schoolboy debating of a debased level. If we learned anything from the last century, it might be summed up in Pastor Niemöller's famous dictum: 
First they came for the communists,
and I didn't speak out because I wasn't a communist.
Then they came for the socialists,
and I didn't speak out because I wasn't a socialist.
Then they came for the trade unionists,
and I didn't speak out because I wasn't a trade unionist.
Then they came for the Jews,
and I didn't speak out because I wasn't a Jew.
Then they came for the Catholics,
and I didn't speak out because I wasn't a Catholic.
Then they came for me,
and there was no one left to speak for me.
Speaking out is how civilised societies are preserved. Meanwhile, one wonders what "vested interests" George Osborne and his colleagues might like to declare....

Monday, 1 April 2013

Mystery of Mary Magdalene

The Mystery of Mary Magdalene: I have just watched this BBC programme on iPlayer and am a bit bemused why Christian Concern announced in advance that showing it on Good Friday was "highly inappropriate and inflammatory" nor why they dubbed it "offensive". Melvyn Bragg concludes, "And I now understand why many Christians feel, despite all the many stories about who Mary Magdalene was, the most important thing is what she witnessed - the very first Easter." It was really rather good, I think.

Titian's Noli Me Tangere in National Gallery, London
Certainly it made me question some of the assumptions I'd previously made, particularly the conflations I'd liked to make bringing the Gospel stories together to make a coherent picture of Mary Magdalene (see God loves the red tops). I'm quite happy living with less certainty about that. Something which also should have emerged for anyone with an open mind was the essential historicity of the central events with which we know she was involved, the crucifixion and resurrection of Jesus. As Professor Tom Wright pointed out, if people had wished to concoct a story of such an improbable event, the last thing they'd have done at a time when women's testimony was inadmissible in a court of law was have a woman as the prime witness.

I just hope that Christian Concern's many supporters did not in the event deluge the BBC with complaints about the programme. It's sad that in this instance CC (who often highlight real issues) prejudged a programme on the basis of a press report and mobilised indignation unjustifiably. In my view it deserves plaudits for being informative and balanced.

I think there's a danger of fuelling religious paranoia unnecessarily. I prefer the confidence of Pope Francis's Easter morning message: “We too, like the women who were Jesus’ disciples, who went to the tomb and found it empty, may wonder what this event means. What does it mean that Jesus is risen? It means that the love of God is stronger than evil and death itself; it means that the love of God can transform our lives and let those desert places in our hearts bloom. God’s love can do this...." And his plea for peace, ending: “Peace in the whole world, still divided by greed looking for easy gain, wounded by the selfishness which threatens human life and the family, selfishness that continues in human trafficking, the most extensive form of slavery in this twenty-first century. Human trafficking is precisely the most extensive form of slavery in this twenty-first century! Peace to the whole world, torn apart by violence linked to drug trafficking and by the iniquitous exploitation of natural resources!" Peace to this our Earth! May the risen Jesus bring comfort to the victims of natural disasters and make us responsible guardians of creation."