Tuesday, 31 August 2010

Ensuring coherent knowledge

Watching the Internet

I am not 'an academic' but I do still expect information to be not just practical but also coherent and valid. Information about Conductive Education, in which good is scrambled in with bad, has been a long-term, major impediment to take-up and implementation of this approach worldwide, a problem now exacerbated by the Internet. This leaves parents and adults with disabilities (and professionals in adjacent fields) facing possible confusion, disappointment and snake-oil.

Viktoria Szolnoki and Donnie Brainard have spoken out strongly about notions of 'therapy' for cerebral palsy:

I admit to having been rather gentler and more oblique when it comes to mentioning misleading/confusing information about Conductive Education,

A dilemma

Perhaps I and others have been too gentle, too oblique. Recently I have been urged to greater frankness of expression. I acknowledge that people mean for the best when they look to inform others (well, a lot of them, anyway) and when they do a franker response may serve especially to offend, in which case I really am sorry. Alternative suggestions of how to resolve this dilemma would be most welcome.

Ultimately it has to be the responsibility of the informed conductive movement to police the Internet, an impossible task in any field and one that no individual wpould be be wanting to do, even if it were do-able. Meanwhile there will be a stratum of sites left stuck in the middle, knowing that there is an important job to be done in informing those who really matter in al lthis, but not having the means to pick their way through the minefields. I am so very glad that I do not have to begin from where people are now. and then try to consolidate all that I find into some sort of sense.

A couple of weeks ago Conductive World commented critically upon a parental-information blog from British Columbia in Canada:

The site offers rich access to conductive upbringing on the Internet, but adds in hang-overs from rather balder, off-key ideas (motor acts/skills, furniture), mixed with existing understandings of cerebral palsy (and Down's syndrome) from outside the conductive tradition. To arrive at your own judgement you can see the posting referred to above at:

This morning came a reproach:

Very well worth reading.

And more...

Conductive Education seems to be really hotting up again in British Columbia (credit presumably to James Forlitti). Just lobbed to me is another page of Internet links that includes a section on Conductive Education, this one from the Cerebral Palsy Association of BC:

Check what parents might find at the end of some of these links. So it goes

I have no time now, immediate or longer-term, to continue commenting and correcting upon the specific content of URL after URL, the Cottonism, the long-closed programs, batting back every ball of this sort that Google Alerts lobs over my net. The numbers and the confusions are likely only to grow. I have already promised as a Christmas present to myself that I shall be closing down all my Google Alerts, and that this gift will be not just for Christmas. I doubt that anyone else will be daft enough to take up this cross, nor should anyone necessarily try. Good luck to you if you do – but please don't call me.

There must better ways. One way might be through local collaboration and action. Perhaps in British Columbia, for example, there is now approaching a critical mass of people interested in Conductive Education sufficient to take on the challenge that, in British Columbia anyway, citizens might in future might be better informed on this topic.

I suspect though that, important or even essential as this might be, more will be needed than that. What do people think that to be...?

1 comment:

  1. Andrew,
    Thank you for this post—this has been my greatest dilemma for a long while. I am curious about the “alternative suggestions” for resolutions, too.
    The way I see it is that people share a ton of information on the internet, and so do they about CE and a myriad of therapies. Then they get responses, comments and so on—and they get offended. They get offended all the time when they think the information they shared is all about themselves, and not about the actual information or the other people who they are supposedly helping.
    For example some parents claim on their blogs that stem cell therapy caused a huge improvement in their child. They regard this cherished idea as a piece of themselves; and they regard anybody who informs them otherwise as an attacker of their person. They usually “attack” back. They don’t realize that the person who shares true and valid information serves THEIR interest, they don’t realize that their person is not under attack, it is the untruthful, wrong information that is under attack. They don’t realize that they’ve been set up by the snake oil vendors, and subsequently they don’t get to find out that having been set up does not make them bad, it makes the snake oil vendors bad. Do these people want to help their child? Absolutely, but they seem to want to be”right” even more so.
    It appears that the post on the “BC Family Blog” about conductive education was meant well, and was written by the intention of helping others. However, if they really had the true intention of helping others, they would have taken your criticism in a positive way, as a means of finding out how to help more or better. They didn’t. They don’t care that they put “bad and downright odd” information on their blog and they don’t care how this might affect others; they just want to be right.
    Andrew, you did criticize flawed CE blog posts by parents before, and those with integrity came back to you and thanked you, or asked for guidance. (I don’t have any energy to look these up now on your blog, but I definitely remember that this happened on at least two occasions.) Those who don’t have the capacity to listen will say whatever they want anyway (and who knows if their next blog post will be about the greatness of the Anat Baniel method?)
    I believe there must be someone who speaks strongly among all those who are “rather gentler” and that someone for now—at least in the field of CE-- seems to be me. I was always outraged by snake oil even as a student. Hungarian parents took their Peto-raised children to Mexico for “cell therapy” in the 90s, which meant the implantation of various animal cells and organs as a “cure” for cerebral palsy. Then they came home and they reported “improvements” which a team of conductors who knew the children inside out could not detect. Snake oil is everywhere, many parents I met (CE parents) tried at least one. When I can’t bear to listen to the next China stem cell story or magnetized blood rewiring the brain story, I come up with a blog post. I haven’t posted anything for two months but I have a few unfinished and unpublished ones I was working on during this busy summer.