Paces

Hanif Kureishi can't skip .... but he is an artist of his own life #CondEd

Here's an article I think most of us in Conductive Education will understand. Unfortunately, it's in yesterday's Sunday Times Magazine section, behind Rupert's paywall: Think and You'll Miss It by writer Hanif Kureishi.

He begins with an amusing admission that, having recently tried, he cannot skip with a rope; his 13-year old son, on the other hand, to whom he handed the rope, "did the whole thing backwards, singing a Beatles song".

Which leads him shortly to:

"My son who can skip and sing, found it difficult for a long time, to read and write at the level of others his age. At primary school he was castigated, even insulted and punished for his inability. After the experts were called in, he was investigated and berated some more, and finally labelled dyslexic and dyspraxic.

"There is, at least, some relief in diagnosis. One is not alone, joining a community of others who have, it appears, a similar condition. But can the inability to do a particular thing be described as a "condition" at all. Would the fact that I can't do the tango, read music or speak Russian be considered a "condition"? Is it a failure of my development? Am I ill?"

He then considers that he was "not much impressed by the imagination and curiosity of the experts" who used an "awkward, objectifying language" and quickly began to talk "fashionably, about brains and chemicals", observing that "Biological determinism is one of psychology's ugliest evasions, removing the poetic human from any issue." ... "What I'm talking about here, I believe, is the attempted standardisation of a human being, and of a notion of achievement that is limited, prescriptive and bullying".

I doubt I can do justice to the main part of his article, but here goes. An 18-year old known to Kureishi, mentioned having been given Ritalin to help him focus, "his mind, he said, kept going off in numerous directions". Rejecting Kureishi's suggestions for alternative causes, the young man, says Kureishi asked himi if "given the choice, I wouldn't prefer to focus at will". This leads Kureishi to consider his own teenage years when "I wanted to be good at things, but, like the Ritalin boy, I fell badly behind at school, finding myself not only unable to learn but at the bottom of my class".

He then goes on to make a powerful case for the value of distraction, provided that the individual be able to "distinguish between creative and destructive distractions by the sort of taste they leave ... and this can only work if he is, as much as possible, in good communication with himself - if he is, as it were, on his own side, caring for himself imaginatively, an artist of his own life."

"There might be more to our distractions than we realised we knew. We might need to be irresponsible. But to follow a distraction requires independence and disobedience; there will be anxiety in not finishing something, in looking away, or in not looking where others prefer you."

It's a challenging thought.

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All the italics here are mine.

 

Expanding the Evidence Universe: Doing Better by Knowing More

This came my way via Mike Chitty on Facebook.

"Expanding the Evidence Universe: Doing Better by Knowing More": A paper prepared for the 2011 Harold Richman Public Policy Symposium. "Salient point: there is valuable knowledge that is not absolutely certain knowledge.

By dint of a bit of digging around, I found a reference to it on a blog "Striving for Change" (which led me to a website for Strive Network:

Education is a lifelong experience that begins well before a child ever sets foot in a classroom and continues long past a cap and gown commencement.

What if we could support every one of our children, from cradle to career, to have the meaningful educational experience to which they are entitled? How great would our impact be?

I bookmarked that site because it looked interesting enough to return to.)

Anyway, back to expanding the evidence universe. You can find the paper in google docs or if it works I might be able to set up a link to a downloadable .pdf file as follows here: Download Expanding the Evidence Universe Dec 2011

"The idea that nothing is worth knowing unless you know it for certain has its place, but not when applied to complex social programs and policies.(i)  We can learn so much, including about program effectiveness, without insisting on absolute proof."

I like the sound of that enough to read the whole paper. You may have noticed the footnote number (i) at the end of the first sentence just quoted. The footnote reads:

"This is the idea that the late MIT organizational theorist Don Schön described as “epistemological nihilism in public affairs,” the view that nothing can be known because the certainty we demand is unattainable.

I can't help smiling at that, "epistemological nihilism in public affairs". One of the main reasons our Special Free School status (and by the Big Lottery before that) was turned down was because we could not evidence with sufficient certainty demand from parents. I always thought that if Steve Jobs had had to evidence demand for the iPad before he got Jonathan Ives to design it, two of my Grandchildren would never have found out that they couldn't live without it!

"Epistemological nihilism in public affairs"! What a phrase. I just love it!

PS No doubt someone will let me know if the links don't work.

Caregivers under strain - in California. Seems familiar

This came into a Gmail account I use as a sort of secondary account. I'm not sure how I came to receive it. Perhaps in the long ago, I signed up for something and have forgotten about it. Anyhow, it's from California; there's a downloadable report, it seems, but apart from that I can't see any way of giving you a link to it. Untypically, therefore, I'm going to copy and paste the whole thing as it seems so relevant to care-givers everywhere. It seems very familiar and I suspect a similar study in the UK would produce very similar results. 

I'm very happy to credit, if I have it correctly, Gwen Driscoll and the UCLA Center for Health Policy Research.

Here it is:

"Stressed and strapped: Caregivers for friends, relatives suffer emotional and financial strain

Family members or friends caring for aging or disabled individuals in California are under both financial and emotional strain and are likely to face even greater burdens, given recent cuts in state support for programs and services that support in-home care, write the authors of a new policy brief by the UCLA Center for Health Policy Research. 

The study looked at California's estimated 6 million–plus informal caregivers of all ages and found higher levels of serious psychological distress and negative health behaviors, such as smoking, compared with the general population. Of particular concern are an estimated 2.6 million caregivers between the ages of 45 and 64 who may be setting themselves up for an unhealthy future due to higher rates of poor health behaviors, compared with both non-caregivers in the same age range and older caregivers. 

"This is the 'sandwich generation,' the group of people struggling to meet the needs of both growing children and aging parents, often alone and while holding down full-time jobs," said Geoffrey Hoffman, the brief's lead author. "Caregivers need help, especially as baby boomers age and place even greater strains on their and their families' abilities to cope." 

Using data from the 2009 California Health Interview Survey (CHIS), the authors found that California caregivers provide an average of 20 hours of care per week for a friend or relative who can no longer do certain things for themselves, such as bathing, shopping, managing medications or paying bills. 

Few caregivers are paid for their work or use state services that might help alleviate both financial and psychological burdens. And with the U.S. Census projecting that the population of those 65 and older will more than double in the next 30 years, the magnitude of largely uncompensated care by family and friends will rapidly increase. 

"We may be seeing an association between caregiving and stress, where caregivers are both more likely to be seriously depressed and to exhibit certain health behaviors that put them at risk," Hoffman said. "These effects on caregivers' overall health merit attention from policymakers." 

Among the findings: 

Caregivers under stress
Mental health: More than 1 million caregivers report moderate or serious distress levels, with almost one-third reporting that their emotions interfere a lot with their household chores (29.9 percent) or their social lives (32.9 percent). 

Middle-aged caregivers struggling: Compared with both older caregivers and non-caregivers of the same age, middle-aged caregivers are more likely to binge drink (25.5 percent), smoke (15.9 percent) and/or be obese (30.1 percent). 

Stress and smoking: Caregivers of all ages who reported serious psychological distress were 208 percent more likely to smoke than non-caregivers with serious psychological distress — an exceptional amount. 

Middle-aged caregivers lack support
Nearly one-third (29.0 percent) of middle-aged caregivers are single, divorced or widowed, and more than two-thirds (67.1 percent) hold down full- or part-time jobs. Nearly one-quarter (22.5 percent) are low-income. 

Caregiving is time-intensive
Approximately one-third of caregivers who live with care recipients spend an average of 36 hours on caregiving — almost as much as a full-time job. A majority (62.0 percent) of caregivers of all ages work full or part time. 

Caregivers of all ages under financial strain
Only 7.4 percent of informal caregivers reported being paid for the help they provide.  Moreover, nearly 20 percent spent $250 or more of their own money on caregiving in the past month. The strains of caregiving may be alleviated by respite services (short-term temporary relief from duties), yet only 13.5 percent of caregivers report ever using any respite care. 

The authors note that recent cuts to California's In-Home Supportive Services program and the scheduled Dec 1. elimination of the Adult Day Health Care program will likely place even greater burdens on informal caregivers. 

"Family members and friends supporting loved ones in need provide the bulk of personal assistance services and often absorb the high costs of caregiving, both financially and emotionally," said Dr. Bruce Chernof, president and CEO of The SCAN Foundation, which provided funding for the analysis. "Programs that support family caregivers can help them create and sustain vulnerable elders in community settings, which promotes the values of dignity, choice and independence as loved ones grow older."

The authors urge support for the Community Living Assistance and Supports (CLASS) program, a voluntary, consumer-funded long-term care insurance program proposed under health reform, which would provide a cash benefit that could be used to compensate informal caregivers and to purchase needed respite or mental health services.    

Other provisions in the health reform law also offer a range of initiatives to provide in-home care to seniors and people with disabilities and reduce dependence on high-cost Medicaid nursing homes, according to the authors. Programs like the Community First Choice Option,   which provides community-based attendant supports and services to disabled individuals requiring an institutional level of care, as well as proposed new Medicaid funding for Aging and Disability Resource Centers, could significantly lift the burden off of family and other informal caregivers, the researchers say. 

Read the policy brief: Stressed and Strapped: Caregivers in California 

Read an interview with the lead author, Geoffrey Hoffman.

The UCLA Center for Health Policy Research is one of the nation's leading health policy research centers and the premier source of health-related information on Californians.  

The California Health Interview Survey (CHIS) is the nation's largest state health survey and one of the largest health surveys in the United States. 

The SCAN Foundation is dedicated to creating a society in which seniors receive medical treatment and human services that are integrated in the setting most appropriate to their needs.

Searching for an answer, any answer, some answer

You probably didn't see this - unless like me you read the Sunday Times last Sunday (or care to pay to get through Rupert Murdoch's paywall).

Underneath a prominent front page picture:

Sasha brown, 3, has taken part in the first trial to treat cerebral palsy using stem cells taken at birth from the patient's umbilical cord. Her parents say her condition has improved.

On page 4, a main news story spreads over 6 columns with a lovely picture of Sasha and her Mum and a pet white rabbit. Two paragraphs caught my eye:

Although Tania Browne's "gut instinct" is that the stem cells are responsible for Saha's improvement, she admits that she cannot prove this because her daughter has received other treatment, such as physiotherapy, occupational therapy and hydrotherapy.  ....

Sasha .... has been treated at Great Ormond Street hospital and Moorfields Eye Hospital, both in London. She has also had physiotherapy at the Bobath Centre and the National Institute for Conductive Education in Birmingham.

I do not criticise any parent for doing everything they can for their child. I do not question that parents will see improvement in their child before any one else.

Yet I am saddened. Firstly, this rare mention of Conductive Education in a leading national newspaper betrays confusion on the part of the journalist. Secondly, I wonder how many parents still chase one 'treatment' after another, looking for an answer?

I wish the Browne family - her parents and Sasha especially - every happiness. At 3 years old, Sasha will be starting nursery and school will not be far off for her. Will she be taught by anyone who understands her cerebral palsy?

"Keep It Real" - Been there. Seen the T-Shirt.

A slogan on a T-shirt worn by someone coming into Paces early this morning gave me the title for this post.

The prompt for the post, however, comes from this morning's Independent newspaper, (previously published in Newsweek, it seems), "Universal Adapter", about Mike Lazaridis, of Blackberry fame. It's an interesting article about innovation, about invention and reinvention, about keeping ahead of the game.

"Innovation is not born of one moment, or one story or even the result of taking risks." Lazaridis says. 

Then, what caught my eye, the prompt for this post, he says: "Really good entrepreneurs only appear to take risks because you don't understand how they made the decision to go from point A to point B."  That resonated with my own experience, not that I am a "really good entrepreneur", but in providing leadership and direction to Paces.

I have on my desk a card by Edward Monkton (check it out in his Gallery), "Where are we going?". I have mentioned it here before. A brief conversation, it ends "Maybe no-one knows" and then, after a pause, "Oh well, I hope it's nice when we get there."

"Understanding" is a two-way communication, of course, with the onus just as much on the speaker or writer to be clear, as on the listener or reader to pay thoughtful attention. The corollary of Lazaridis view, is that often, in my experience, the "entrepreneur" is often not quite sure himself or herself how the "decision to get from point A to point B" was made.  The "entrepreneur" may be clear (unlike the happy souls on Monkton's card) "where we are going", but being clear about the reasoning is not always so easy. There is a risk element, and an intuition, which do not easily lend themselves to hard evidence. And for others to demand that evidence before a decision is taken to set off for Point B, may well destroy the innovative strategy altogether, and, all together, we just wander along with Monkton's happy people.

Take Free Schools, for instance .... and their value to the groups of parents and charities who have come and gone, and some remain, struggling to bring conductive education into the mainstream, so that parents may have some choice in the education of their children with cerebral palsy.  I was recently asked the very reasonable question why Paces was preparing to submit a Proposal to DfE to become a Free School: a question, you might well think, for which a clear, reasoned answer would be straightforward, the case well-made, the benefits and risks assessed and evidenced - before any action is taken. One would think so.

The Proposal form invites those considering an application to "Briefly outline your reasons for wanting to set up a Free School".  That is one sort of answer, one sort of set of reasons: more choice, increased sustainability, greater flexibility and so on, each statement evidenced or able to be evidenced.

But there are other answers and other factors, maybe more important in the process of decision-making, to reaching the conclusion that we should move from Point A to Point B, and some of these reasons may be difficult to explain and evidence and consequently difficult for others easily to understand.

One  'other answer": Mike Chitty has stimulated a discussion "Putting Power in the Hands of Individuals and Communities" about the "Big Society" which for me (I have added a Comment) points to such 'other' answers, less easily set out and grasped perhaps, but to do with the national policy environment in which we in conductive education are trying to bring it into the mainstream, which, as John Popham says in a further Comment, recognising the downside nevertheless "it may also offer the opportunity for people who want to do progressive stuff in education to get things off the ground".  And doing "progressive stuff" is what conductive education and Paces (and others) are about. 

A second "other answer": Tom Legge, New Schools Director at Place Group, who emailed me following my recent posting about Paces' Free School Proposal being submitted, writes of the Free Schools Policy on his LinkedIn Profile, that he is: "Inspired, frustrated and terrified in equal measure with the biggest change in education policy in my lifetime.  Convinced that Free Schools are part of the solution to improve life chances for children and young people". My italics, my opinion exactly.  We are compelled to respond, to seize the opportunity, to create the opportunity if possible by influencing public policy by being part of it. We could, as many are, step back and wait and see. And miss the boat.  

There are more "other answers", equally intangible, to do with our foundation and founding purpose and ambition and searching out our 'place', which are important too. But to return to Mike Lazaridis:

Lazaridis goes on to say that "really good entrepreneurs" make the decisions they do, which seem so full of risk to others, because "they do a tremendous amount of homework".  That resonates with me, too. The decision to put forward a Proposal to create a Free School, comes from "a tremendous amount of homework" over literally years; it is not a step "born of one moment, or one story or even the result of taking risks".  It is a decision, perhaps, less to do with reason than with judgement. And above all, doing everything possible to "Keep It Real".

Been there. Seen the T-shirt!

Come on! Give me a hug!

There's a story in this morning's Independent "A hard Chair equals a hard heart" based on a report in the journal Science. John Bargh of Yale Psychology Faculty reports work extending his own 2008 research that experiencing physical warmth promotes interpersonal warmth, that tactile sensations influence social judgments.

A couple of quotes from the reports:

""Touch remains perhaps the most underappreciated sense in behavioral research," says co-author Christopher C. Nocera, a graduate student in Harvard's Department of Psychology. "Our work suggests that greetings involving touch, such as handshakes and cheek kisses, may in fact have critical influences on our social interactions, in an unconscious fashion." (eScience News)

"Nocera says that because touch appears to be the first sense we use to experience the world -- for example, by equating the warm and gentle touch of our mother with comfort and safety -- it may provide part of the basis by which metaphorical abstraction allows for the development of a more complex understanding of comfort and safety." (Science Daily)

You'll see from the links that a quick Google shows that substantially the same report is already being replicated on the internet before reaching this morning's UK newspapers.

I'm reminded of meeting Tony Blair and of all the images of all those politicians greeting each other with a hand-shake and a touch to the elbow or shoulder.

As ever with such research reports, I ponder what happens in early days, months, years (and even over lifetimes) if the opposite is the case - here, the absence of tactile interactions: a mother and child separated at birth, the baby in intensive care maybe; a child with cerebral palsy who cannot, through movement dysfunctions cannot initiate the interpersonal tactile experience; does initiate matter?

And I wonder what this might have to do with conductive upbringing and conductive pedagogy, with not just children but adults too.

Come on! Give me a hug!

ICF & CP - a link. Maybe useful to you too?

Over on Andrew Sutton's blog, prompted by recent posts on László Szögeczki's blog, and there too, are discussions about ICF (the International Classification of Functioning, Disability and Health) and conductive education.

Thinking I ought to learn more about the ICF (why is it not ICFDH? and what is ICFDH-CY?), I did some googling about. I came across this website of the Sunny Hill Health Centre for Children

Looking a little down the page, I found and downloaded two documents:

ICF-CY CP core sets powerpoint

Text of Veronica's talk

"Veronica" is Veronica Schiariti, MD MHSc PhD (C), Developmental Paediatrician, Children and Youth with Disability in Society (CYDiS), Child Family Research Institute, University of British Columbia.

It's all quite recent: May 3, 2010

Actually, a bit of a confession: as Sarah's Dad, I've never quite 'got' all this "medical", "health", "treatment" "habilitation" "rehabilitation" stuff. OK, she's had a couple of operations but so have I and a friend has had both hips and knees 'done' and he hasn't got CP. Sarah's really rather healthy. Always has been. Good appetite too. No - what first triggered me & CE was her education and what was or was not happening for her at school. And CE quite quickly got me thinking about her upbringing (her nevelés) and what her Mum and I should be doing about that (I really will read Dina, one day, Susie) so it all rolled into "learning" for me or just her "growing up". And now I'm busy doing exactly the same for my grandchildren (the youngest, Ryan, is 4 tomorrow; the next, his cousin Maisie, starts big school in September; his sister, Ria, has already got school and teachers sussed and his cousin Billy, well he's 6 going on 6-and-a-quarter, so what's new!). But I'm thinking about their schooling and how they're getting started on behaving as little learning animals with a lifetime of learning ahead of them - not their health. I think about their health only when they are not well. Same with Sarah. Now I know that our experience with Sarah and her CP is not everyone's experience. I know that not all people, with and without CP, are fortunate with their health.

But there's this: why can't we stop talking (or just leave to the medics) all the different classifications of CP and simply talk about whether Sarah (when she was at school) should or should not learn French, or do music (not, so help me, "music therapy") and stuff. She'll be home in a minute. She's been out to the pub up the road with a couple of friends (staff) from Paces and she'll have had a really great time. Just like everyone else in the pub (except the sad guy in the corner). How did she learn that? Not by getting her ICFDH classification right.

Evidence-based practice

No - not in conductive education but medicine. Here are the links. The starter is a blog article by Dr John Briffa: BMJ piece reminds us just how ineffective much of modern-day medicine is.

His reference is to an article in the British Medical Journal by its associate editor, Dr Christopher Martyn: Why medicine is overweight (Ref: BMJ 2010;340:c2800 - full article by subscription only).

In an earlier post, just a month ago, "With medicine, it seems less can be more", Dr Briffa reflects that "The problem is, however, much of medicine is stunningly ineffective. And it’s not without risks either."

The first post mentioned links back a couple of years to Dr Biffa's reflection on a debate organised by the Guild of Health Writers, the motion being that ‘A treatment should have to be scientifically proven to be available on the NHS’, in which he asserts "However, I think we doctors should more readily accept and be honest about the fact that only a small portion of conventional medical care is ‘proven’. And the fact that something is not proven does not render it invalid."

The first post also links to a yet earlier post on "adverse events’ of medical interventions.

The postings are worth reading if for no other reason than the insights they give us in conductive education to the debate amongst practitioners of another profession about the claims made for evidence-based practice.

New Government data source

Government statistics: Very briefly & in haste, dry as dust unless this sort of thing interests you: 

"Unlocking Innovation: Working with UK Public Sector information and data.

"Advised by Sir Tim Berners-Lee and Professor Nigel Shadbolt and others, government are opening up data for reuse. This site seeks to give a way into the wealth of government data and is under constant development. We want to work with you to make it better."

It's actually an exciting and potentially rich source of easy access to information of use to all campaigners.

Today's Guardian reports:

"Web founder Tim Berners-Lee has unveiled his latest venture for the UK government, which offers the public better access to official data.

A new website, data.gov.uk, will offer reams of public sector data, ranging from traffic statistics to crime figures, for private or commercial use.

The target is to kickstart a new wave of services that find novel ways to make use of the information."

A very quick test search using keywords "education" and "special" led me easily to statistical information (also in downloadable form as a document) about the performance of local authorities in issuing Statements within 26 weeks. Useful background information for tackling Tribunals, for instance.

Onwards and upwards! Another day beckons. We are busy and excited at Paces planning some much needed refurbishment work.

Stuff and nonsense - and an outright lie

In a moment, I'm going to quote you word-for-word an outright lie, as recorded in the minutes of an important meeting.

First, though, let me provide some context: an LEA (not Sheffield) multi-disciplinary meeting of a statutory assessment panel. 5 people are present; 3 from the LEA; the Headteacher of the LEA's preferred placement school; and a Consultant Paediatrician. (You might like to reflect for a moment on the composition of that Panel, but that is a separate point.) The Panel is convened to make a decision about the placement of a child approaching statutory school age who is currently in a conductive education setting, which the parents wish to continue.

Now for the lie. The minutes of the meeting report the Headteacher as having asserted:

"Marketing quite aggressive from [conductive education setting] as it is in independent sector".

Now I happen to know that the conductive education setting has never advertised, promoted or marketed its services in any systematic way whatsoever and to describe it as "aggressive" is fanciful at best.  Once, long ago, there was an advert in a cinema-chain magazine; there is a website (who doesn't have one these days?) - and that's about it. Like most conductive education settings, it relies almost entirely on word of mouth.

So why would somebody state as a truth something that they know is not a truth? Why, in other words, would they tell an untruth? Why, in a meeting of such importance to a child and its family, would they assert what they can only know to be a falsehood? A falsehood, moreover, which the other people present have no means of knowing the truth of and which they have to accept at face value.

You might ask what possible relevance the marketing strategy (even if it had one) of the conductive education setting has to do with the criteria for the decision on the placement of the child.

Now you might also say that all of this might be so - but it is not so shocking. Why be so perturbed about it?

My answer would be this: that we all - and the parents especially - have a right to expect that those empowered to make such important decisions, not only should not assert that which is not true, they should also make it their business to be properly informed.

In the rest of the minutes, you can read that conductive education caters for the physical aspects of children; that outcomes of conductive education are better if the cognitive level is good; that conductive education (by implication) is patterning or conditioning; that there is no research to prove the benefits of conductive education over LEA provision.

Stuff and nonsense. Is it not ironic that the discussion should include an appeal to evidenced-based practice, when there is such a lack of understanding on display about conductive education, and no apparent wish to ensure that the members are better informed?

Yes, they should make every effort to properly inform themselves. Yet there is something more.

I have deliberately not 'named names'. The point I make is not that this specific discussion of this specific panel in this specific LEA (the knowing falsehood aside), is especially at fault. An elephant, after all, (to misquote a Swahili proverb) can only behave like an elephant. It is distressing when it tramples on termites - certainly from the termites perspective, but that of itself does not make it a bad elephant.

No. What really perturbs me is how we can drive out such nonsense. How can we in conductive education put across our case so that what conductive education actually is - and what it is not - is better and more widely understood?