Monday, March 10, 2014

Is Conductive Education a scam?

When I was asked  to deliver keynotes at Conductive Education World Congress last Fall, my mother was surprised. She couldn't see how I could be perceived a success story of that rehabilitation method at all. From her perspective, after a few years we've given up on it. When it got too burdensome to work into a daily routine, too time consuming, too painful to lock my leg braces straight and I got too tall and too heavy. How can I be a success, if we quit it and it never got me the one thing my parents always wanted, the one thing that all of this was meant to lead to, the thing that would justify years of sacrifices, hard work, different approaches, costly therapies and a prolonged stay at a foreign institute: me walking. From my mother's perspective my years in Hungary were a failure. That's the funny thing: she knew the excises, she understood the routines. We even mixed and matched to make our own and adapt them to the conditions, tools and furniture in our apartment. She understood the mechanics of the method fairly well. But it was never properly explained to her what it did and why. But unlike some of the other parents who felt CE didn't deliver the results my parents had hoped for, we didn't blame the method- we blamed ourselves. Perhaps we weren't focused enough. Maybe we didn't put enough hours in the day into it. My father saw me as a slacker. He felt I wasn't ambitious enough, that I wasn't working hard enough and routinely he would try to scare me into what he felt was getting me to put 110% into it by telling me horror stories about how if I don't get my act  together, I'll end up in an institution, in a bed, with a hole under me to deal with my bodily functions. It's a pretty heavy thing to tell any eight year old and it gave me nightmares. But I also think it's what drove me to America to be independent. Recently Andrew Sutton cited a post from one of the disappointed parents who didn't get the result they expected and concluded the method is at fault and therefore it must be a scam. And I can relate to it somewhat. Nothing was ever explained to my parents either, and they were too, disappointed. But instead of blaming the center, they blamed themselves and me. If it doesn't work after all, there must be a reason for it. What my parents didn't see- was my increased mobility. My better balance. That I could get around more. That I could figure out how to transfer myself from a chair to a wheelchair, how to climb on to a bed, how to figure out where to push and where to pull to get on a toilet seat. For me- and I can only speak about my own experiences and what I think I benefited as everyone is different- it was something that greatly benefited my quality of life. And it allows me to function today. But my parents didn't know it. Because the Peto Institute never bothered to explain anything.  You were just expected to blindly follow a conductor, an authority figure, and trust that there's a reason for everything that happens on the floor. And I think Hungarian Conductors were spoiled by this uniquely highly regarded authority position they had in Budapest. They go to other countries, other places where they need to defend and explain their own method. They have to convince the parents. And I don't think they're prepared to do so. But guess what: we live in the age of information. It's very difficult to built a positive reputation and it's so easy to trash it. If the Institute in Hungary is not forthcoming with data and research somebody else will fill that void. When a few weeks ago I suggested that Conductors would benefit from having a support network and training I was practically told to mind my own business and go observe something else by some vocal commentators on Andrew Sutton's Facebook Page. It seems to me, that Conductors in Hungary got pretty used to a certain visibility of the method in Europe and the respect that they get. As someone who worked at a nonprofit that offered CE in America I have to stress that over here we struggled for every ounce of publicity and media attention. It was my impression, that as recent as 3 years ago it was seen as a novelty and a method that had a hard time distinguishing itself from therapies in an accessible, media friendly way. If you are  a Hungarian Conductor moving to America- to quote "Wizard of Oz": You're not in Kansas anymore. It was only last year that I sat down with my mom and I explained all the things CE gave to me. It only took her 25 years to understand. Is CE a scam? Not from my experience. But there's a lot of misinformation, very little to no research and explanation and a whole lot of attitude. I think some of it comes from Communist times, where a lot of relationships- be it doctor-patient, salesperson-customer, administrative worker- citizen where built around the disproportionate  difference in the position of the parties, when one has the power and the other has to endure. A recent quote compared a Conductive Education sessions to Hitlerjugend. Initially I laughed it off. But then it got me to think: maybe it's not as ridiculous, maybe us Europeans are just more likely to submit? After all Americans often challenge authority and often bring up their Constitutional Rights. Here's what I say about happens during those exercises. How is different from having a couch or a professional trainer? How do you  exercise if not through repetition?. Just an hour ago I saw an infomercial for a boot camp like fat burning exercise routine program on a DVD, where a marine like looking ripped and angry instructor inspires you to lose weight and only needs 35 minutes a day. And it's easier and certainly less boring to move through intelligently composed routines that involve speaking or singing. No, I don't think it's a scam. But I certainly think CE is failing the parents by not communicating, by structuring a dependency like relationship instead of dialogue. It's certainly failing its own legacy by thinking people will just come to it if it's there, by not defending it's image, by not being transparent, by not producing volumes and volumes of papers and books on the subject. Because if its supporters stay quiet, its opposition most certainly will not. I think it's fair to ask: What is my child likely to benefit from this. I think it's fair to ask to see some research, some case studies. CE was never cheap. My dad got a second job and when that wasn't enough we went working abroad. I think it's fair to ask and to question if you tie your family resources into this, often go abroad to give their child a better life (the Peto Institute only accepted dollars as a form of payment when I was there) and if you put your future, your hopes and dreams into the hands of a stranger.

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