Tuesday, 29 June 2010

CE and muscular dystrophy

Information and reassurance, please

On the Conductor blog, Susie Mallett has written an extensive posting about her conductive experience with children and young people who have muscular dystrophy.


She closed her posting by asking others with knowledge/experience of conductive practice with such children to write in, share and discuss – in the event, to no avail. She than added a further comment, in which she addresses me personally (though there are surely others enough who could better answer her historical question) –

Andrew, a question for you in relation to muscular dystrophy When you were visiting the Pető Institute in the early days, before I was there studying, do you remember ever having seen or heard of groups for children muscular dystrophy?

Here is my response, as posted on the Conductor blog –

In 1984, in my first visit to the then State Institute (those were socialistic times, and any thought of the Pető Institute that was to come just a few years later, was quite unthinkable). Yes, on that first visit I did ask Mariá about children with muscular dystrophy.

She told me exactly what you were told, at the start of the nineties – almost word for word – that the other children found it very distressing when such children died, and so children with this condition, and other life-limiting conditions, were no longer admitted.

I recall regarding her explanation as implausible. Partly this was due to the way in which she told it, in that rather hasty, shifty manner that I later learned was how she spoke when she was being economical with the verité (I had plenty of opportunities to observe this, and to check and double-check what she was saying, on a variety of topics over the years that followed!). Partly, though, the a priori implausiblility of what she was saying stood out: it just did not 'fit' somehow with what I saw and what I heard of about how she ran her Institute.

Yes, I smelled a rat but, and here was another of her familiar traits, cold, steel shutters would come down instantly if one tried to question or argue with anything that she did not wish to discuss. I am sure that you will recall this one, as others do. I had known her for only a few days when I asked about muscular dystrophy but I already knew that it would be fruitless to pursue this.

I was left with just speculation. Was this the result of a diktat from the Education Ministry that she had fought and lost,and had no choice but to obey? Was it pressure from the staff that she had had to bow to, but would lose face by admitting to an outsider? Was it a result of her own decision in response to some single case that she now regretted? It would surely have been distressing, as it is in any school for children to dies in her close-knot community: but maybe the State Institute had not dealt well with this, which she was embarrassed to admit. Who knows?

Two things, though, do emerge:

(a) the conductive pedagogy/upbringing had been used with children with muscular dystrophy, right up unto the ends of their lives;and

(b) it had not reportedly been discontinued for reasons inherent within Conductive Education (or, if you wish to continue speculate, maybe it had but it did not 'work' – and that is something else that she could not bear to admit!).

Not a lot of hard information, I am afraid. It is gratifying to read above of satisfactory practice outside Hungary, that tends to answer the parenthesised speculation in (b) above.

I do hope that someone writes in to fill in this small but vital gap in our understanding of the applicability of Conductive Education

It would also offer some public reassurance that the trade of conductor can assume some of the substance rather than adopt superficial trappings of being 'professional' in the established sense.)

A fragile craft

For the moment, as far as I know, Susie Mallett's posting represents the world's sole communicable knowledge of the practice of Conductive Education with children who have multiple dystrophy – which is rather more than there was a week ago! What a fragile craft (both senses) is Conductive Education. A single further written contribution would double the written knowledge base on this topic!

What happened here has been wholly predictable. Whatever reason that this particular practice ceased, then that was it. Memories apart, the light had been snuffed out to be rekindlable only as long as there are conductors who have the confidence and the flexibility to adapt what they know from 'other conditions' – but then they are on their own.

How secure and safeguarded is the conductive knowledge across all of the conditions to which it is potentially applicable – not just those that survived over the 'classic' stage of the historical development of Conductive Education, which is about as far as living memory now extends.

With the wisdom of future insight, what other losses might seem to have been wholly predictable?

Reference

Mallett, S. (2010) Muscular dystrophy and a conductive upbringing, Conductor, 21 June

2 comments:

  1. When I was a student at Peto, we were shown a video of the muscular dystrophy group, which, by the time I was a student, didn't exist. I remember one of the students asking why children with MD were not admitted any more but we didn't get a relevant answer (not even the answer Andrew got from Maria Hari), so we just had to accept 'just because' and wonder why this, and many other things we didn't understand happened at the Peto Institute. I remember we also got some material about Peto working with lots of conditions at the beginning (I don't have any of that material right now and I may not remember well), but I think it contained some cardiac and respiratory diagnoses.

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  2. Strange way of 'training': show them and tell them things but don't tell why! I do hope that the new generation of student-conductors is being educated under a less Sztalinist regime. Still, it is nice to know that there's a film buried away somewhere... there is probably unpublished textual material too. I wonder whether such knowledge will ever become communicable. Even a published catalogue would be an extraordinary step forward.

    Not immediately to hand I have some published information on the range of things that Pető's State Institute did. I shall try to remember to dig a bit of this out next week. If I forget, nag me. I sometimes forget how little people know about where this approach ('Conductive Education') comes from

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