Friday, 3 September 2010

Opiates of the people


Stem cells have been in the news this week, on both sides of the Atlantic. Yesterday, Conductive World remarked upon the sort of real human story that underpins this general concern:

On 1 September conductor Vikki Szolnoki had posted a long comment oto an earlier posting here on Conductive World. On 3 September conductor Susie Mallett published a long posting on her blog. Vikki and Susie come at the question of 'therapies' from different angles, but both from within the socio-psychological, developmental standpoint of conductive upbringing . I agree with both of them, and highly recommend both contributions:

Reading these two essays had me considering how I myself presently view the issue of 'therapies' and snake oil, both within Conductive Education and without. My way into the problem is different from theirs, not least because I have neither family nor practical experience to start out from. Here is as far as I got...

A figure of speech

I suppose that I look upon 'therapies as the opium of the people (that is those many people with chronic or life-ending conditions and no satisfactory means provided to ease their living). I might not personally think highly of reliance upon opiates but who am I to deny something that dulls pain and brings happy dreams, if only temporarily? The real problem is not the opiates but that people are left with nothing else.

The situation of course varies enormously according to the physical conditions under consideration and the psychosocial contexts of the treatments in which they are implemented. Here I consider only developmental disabilities, and only certain of them at that.

Of course there are families of deaf and blind children who may seek something, anything, to take away their underlying problem, to have their children hear or see.. My impression is, however, that most are highly occupied with getting on with the business of bringing up their children, utilising the compensations physical and psychological that their children's developmental disorders require for successful upbringing from infancy to adulthood.

Why is this? Because society has understood for a long time now that blind and deaf children are educable, teachable, 'bringable-uppable', and has developed various means towards achieving this (that these do not always agree, no matter – they are there), and it has set up systems to provide these to children and to share them with families. When you know what there is to be done for your child, and your own role in this, when you know that the state can provides a real range of educative experiences, when everybody whom you ever meet, everything that you ever read, assures you that your child will learn if the right measures are taken, then who needs 'therapies'?

Contrast with the situation in motor disorder. No wonder parents reach for the opium of therapies. At least in doing so they are exercising a little active agency in their child's development (something that they may be assured by mainline services is not worth even trying). They are doing something and they may feel the better just for that.

Ultimately I do not blame parents for recourse to such opiates. I do not even necessarily blame the traffickers, many of whom seem as naïve about the nature of disability as anyone in the children's lives.. Responsibility surely lies with the institutions that create the pedagogic and therapeutic vacuum which may be all that concerned parents gets in return for all the taxes paid and the loud, public pretensions of 'support'.

Another one

To paraphrase Karl Marx (only a tiny bit, by substituting one word from another, throughout):

Therapy is the sigh of the oppressed creature, the heart of a heartless world, and the soul of soulless conditions. It is the opium of the people. The abolition of therapy as the illusory happiness of the people is the demand for their real happiness. To call on them to give up their illusions about their condition is to call on them to give up a condition that requires illusions. The criticism of therapy is, therefore, in embryo, the criticism of that vale of tears of which therapy is the halo.

In presenting this paraphrase, I do not of course mean that he families of motor-disordered children can give up an underlying physical condition, say spasticiy, any more that the families of deaf and blind children can give up deafness and blindness. The condition is now a material fact of their existence. It is the social condition that has to be given up: the informational and moral nihilism that may envelop children with motor-disorders and theinfamiies, the illusion that other than physical 'cure' there can be nothing done, there is no way forward save acceptance and defeat ('coming to terms', 'acceptance', 'coping', as they say).

In 1843, Marx was calling for revolution. In 2010, as far as society's understandings and services for motor-disordered children and their families are concerned, revolution (overthrow) of the presently dominant way of construing motor disorders (and how to deal with them).remains probably the only way out of a present situation that, through its very negativity and lack of practical benefit, may actively drive some of those in extremis 'out' to seek whatever alternatives they can find, however implausible these might sometimes appear, wherever they are and whatever the costs.

At one time I had rather hoped that Conductive Education might provide the catalyst for paradigm change in special education and (re)habilitation – and in the usually unspoken assumptions that underpin them. It is not yet too late but I do wonder whether Conductive Education as a whole has sense enough of its potential destiny to do this, and whether instead it risks i its turn becoming part of the wider problem – just another opiate, another therapy.

1 comment:

  1. I don’t agree with Susie at all—which might be strange since she is a conductor just as I am.
    However I don’t see an argument here—Susie is talking about her own personal experience, and I am talking about mine. Mine is the following: there is nothing else but disappointment, despair, unbearable financial strain and some form of neglect of the child later in life that comes out these (always unsuccessful) attempts of “fixing” the child. Who am I to judge? I am just in the same position to judge as Susie herself is: we both judge from what we see happening to the people and their families who come to us and give us accounts of various therapies they go to.
    To me there’s nothing positive about families who don’t have a family life because they’re always on the road with their disabled child, driving from therapy to therapy, continuously looking for the latest “fix”, and there’s nothing positive about the unbelievable financial hardship that doing 20 therapies at a time brings on an average middle class family. If this kind of “parenting” is non-existent in Germany that’s good news, for everywhere else I’ve been this was the reality and it is my reality here, today. The biggest problem with the snake oil is NOT that it doesn’t work. The problem arises when doing snake oil therapies becomes a lifestyle, when normal family life and activities become secondary or even non-existent, when there’s no playtime, family dinners, friends sleeping over, parents going out (god forbid), because everything revolves around the therapy. In my judgment this is not a good thing, regardless of who writes lengthy blog posts (or fill books if they wish) about their positive experiences with snake oil.
    There are, of course, cases when there’s no damage done of any kind. There are some “alternative” things out there that can be pretty fun, or even a family activity, things that people do that bring them closer together. I drove a lady with MS to a “healing hill” a few years ago which was a lovely day trip we both enjoyed and we joked about her being “cured” after the trip so she wouldn’t need any more CE. These aren’t hurting a soul. These are not the issue. Doing something fairly benign at the right time for the family, maybe a trip to a religious site or visiting some famous guru does not come close to the damaging effects of the constant nonsense-fed false hope that overwhelms and drains people and does no good whatsoever.
    JoyMama’s great blog post about snake oil: