Saturday, 17 November 2007

Cerebral palsy: some hope

Cerebral palsy is a permanent disability that affects movement. It results from damage to the developing brain, usually before birth... There is no pre-birth test, no known cure and, for most, the cause is unknown. People with cerebral palsy may also have seizures, and sensory and intellectual impairments.

Just another tiny example of what again and again society tells parents of children with cerebral palsy, and not just parents, but those employed to work with the children and their families, the social organs that pay for this, and ultimately of course the children themselves as they develop their own awareness of themselves.


Hope

Ask parents about Conductive Education, and so often the spontaneous answer is ‘It’s given us back hope’.

The absence of hope is despair. How dare anyone have robbed fellow human beings of hope? Who could do such a thing to cerebrally palsied children and their families. To deny hope is to help create despair.

What sort of thing is hope, is it psychological (an emotion) or philosophical (a value, a guiding principle)? Or in hope are the two inextricably mixed? One of the paediatric references that comes up again and again in ‘reviews of the literature’ on Conductive Education levels the accusation of ‘false hope’.

Is it really possible, however, psychologically or philosophically, to have ‘false hope’? Emotions and values are neither true nor false... they are what they are. They might be judged by others to be feigned, misguided or whatever, but to state unproblematically that they are ‘false’, as if nothing further needs considering about the matter, is glib and disingenuous.

What is the opposite of ‘false hope’? Presumably, ‘true despair’.

Ask a hostage released from months of isolation in terrible solitary confinement, ‘What kept you going? Didn’t you feel that people outside have forgotten you, surely you knew that you were going to die, that your position was hopeless’. The survivor’s answer often includes ‘hope’. The the ex-hostage is lionised for his strength of character, and everyone rejoices for the wonders of the human spirit and its role in facing the most daunting adversities. And we remember with sadness those who ‘lost hope’, turned their faces to the wall and succumbed.

When Conductive Education ‘gives back hope’ to those from whom it has been taken away, it is not hope of ‘a cure’ but renewed hope that the family may again take control of this child’s upbringing, and exercise direction and choice rather then succumbing to an inevitable, unescapable, biologically determined outcome.


Developmental disorders

Everyone now knows, surely, that developmental disorders are ‘dislocations of development’, in which certain developing children’s active interactions with their social and material worlds are systemically interrupted and their learning and development diverted. If, for example, certain children cannot hear like other children then nobody questions the enormous developmental effects of their not being able to participate in the social world. Given this, modern society makes sure that the children’s parents appreciate their children’s prognosis at the physical level but, in responsible, civilised countries, the relevant organs of society immediately get going on the psycho-social interventions that will help reset the ‘dislocation’ with the world.

Try a silly substitution exercise, like the one that I did in my previous posting (‘Conductive Education fantasy’, 13 November 2007). You can, if you wish, be pretentious and call this a ‘thought experiment’!

Just substitute the term ‘hearing disorder’ for ‘cerebral palsy’ in the quotation that heads this posting. This is what you get:

Hearing disorder is a permanent disability that affects communication. It results from damage to the nerves of the auditory system, usually before birth.... There is no pre-birth test, no known cure.... People with hearing disorder may also have seizures, and other sensory and intellectual impairments.

And that’s it. Not a word the important things that happen as psycho-social consequences of the hearing loss, nor of the psycho-social interventions that and (should) be made to create ways around these., about amplification, parent classes, deaf education, signing, the deaf community etc., etc., etc. Nothing about the active choices that families and young deaf people will face in the years ahead.

No one involved in bringing up children with hearing disorders would stomach such a stark, hopeless message of despair. The voluntary societies and the professional associations would be up in arms.


So what about cerebral palsy?

Few people think that cerebral palsy can be cured in the biological sense of the word. Those that do can and should be gently disembarrassed of the idea. This is not a question of hope but of ignorance and should be dealt with through education towards a better understanding of how things work.

This is not to say that the developmental effects of cerebral palsy, its secondary and tertiary psychosocial sequelae, should not be countered by every means possible, as happens for example when a child has a hearing disorder. Somehow or other the various conditions marshalled under the umbrella rubric of cerebral palsy are often perceived as somehow different. Either there’s no real special need at all – which seems an important component the present official position in the United Kingdom (more of this perhaps at some later date) – or the whole condition is somehow explained (and dealt with) by consideration at the ‘physical’ level.

Actually the two positions are complimentary rather that mutually exclusive. They both depend upon a predominantly physiological (what I think is meant here by the word ‘physical’) understanding of the situation and what could/should be done in response. They are both therefore reductionist with respect to human mental development and, by marginalising of turning totally away from the psycho-social nature of motor disorders (essentially no different from the psycho-social nature of all developmental disorders), they block off appropriate response to what is happening, they deny hope, they are inhumane and destructive of human good.

The reason for airing this topic here is that I have just received an email, a perfectly reasonable enquiry from someone working in a large voluntary organisation providing services for children and adults with cerebral palsy, and their families, in an English-speaking country.

It was not the enquiry itself, however, that seized my attention, and holds it still, but what I read following my innocent correspondent’s signature at the end of the email. Like many corporate bodies this organisation takes the opportunity of the thousands of emails that its staff sends out every day to hammer home what it regards as an important message, at the foot of each letter following the individual employee’s signature. Elliott Clifton advises me that this is also called a signature – or less confusingly, a ‘signature block’.

I suppose that there may be ethical issues to be raised here about corporate and individual opinions but these are not my concern here. This is what this corporate message said:

Cerebral palsy is a permanent disability that affects movement. It results from damage to the developing brain, usually before birth... There is no pre-birth test, no known cure and, for most, the cause is unknown. People with cerebral palsy may also have seizures, and sensory and intellectual impairments.

The dots in the middle of the quotation (...) indicate where I have removed a sentence. I did so because this sentence revealed the name of the country. Perhaps I should be less squeamish (old habits from a life in the system die hard: I hope that even now I can still learn to be more outspoken).

But oh dear, with friends like this what hope for an understanding of cerebral palsy fit for the twenty-first, rather than the nineteenth century?

And without a proper developmental, systemic understanding of cerebral palsy and other motor disorders what hope for Conductive Education?



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Signature blocks, like everything else that falls into the hands of corporate marketing, run a high risk of simply making the email, its sender and the organisation, look naff. see:


https://83.105.23.2/exchweb/bin/redir.asp?URL=http://www.informationweek.com/blog/main/archives/2007/08/what_does_your.html

2 comments:

  1. An education officer from Barnsley LEA, now retired, with whom I was having an otherwise amicable conversation about placements at Paces School (or rather why Barnsley LEA would not place children at Paces School) explained to me that the problem was that they relied in making these "difficult educational decisions" on input from therapists and paediatricians, who by and large, she said to me "do not agree with your understanding of cerebral palsy nor of the educational arrangements you propose."

    I, of course, thought that her understanding of cerebral palsy was locked in somewhere around 1860.

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  2. Interesting post, Andrew. It deserves a reread to fully digest.

    As I see it, and as Norman's comment perfectly demonstrates, cp is still viewed from the medical model which only sees the 'illness', the deficits - and where is the hope in that?

    Remove the child from the 'patient' role and place him in a supportive, accepted and accessible environment and watch potential and hope overflow!

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