Saturday, 9 May 2015

SUCH QUESTIONS...

Such answers?

I have to thank Rony Schenker for sharing a recent blog posting with me. It is written by the mother of Caleb, aged nine, who has spina bifida. The topic that she raised here could apply to people with any motor disorder, of any age –
To walk or not to walk... that is the question 
Caleb can do it... but he hates it. He doesn't like walking with his KAFO's. He doesn't like walking. It's hard, awkward, and cumbersome. Honestly, it's not functional...it's simply walking for the sake of walking. He hates it...

His answer without hesitation: No. 
Walking is not important to him. He's 9 years old and I think he is old enough to be a part of his goal planning. He should get a say. And he says 'No' to walking. I get it. I really do. Walking is really hard work for him. And he needs a lot of support to do it. Even when he was walking really well (before the tethered cord surgery 3 years ago... wow, has it been 3 years?!) he would choose his wheels over his walker when given the choice. After that surgery he lost everything. He had to start all over. He's had to work so hard to gain back even some of what he lost. I was hopeful that he would gain back the ability to walk but then weeks turned to months... and now years. I'm not so hopeful now. And honestly, I'm okay with that. I've never had a problem with his need for a wheelchair. I love his wheelchair. It is independence, speed, confidence and mobility. It is a blessing. 

I'm okay if he never walks again. But I want him to be okay with that. I think he is. Walking isn't important to him. I respect that. I'm actually relieved to hear him say it. I feel like a weight has been lifted.
Perhaps it is significant that this blog posting makes no reference to Conductive Education – perhaps indication of how far Conductive Education may have now withdrawn to the outermost fringe of general awareness. Once, however, the central point of this blog posting, the relative importance of walking as a goal within motor disorder, was a major issue around Conductive Education. It confused public understanding of Conductive Education and infuriated a Pol Pot tendency within the disability movement.

There are still some confused statements about the centrality of walking within Conductive Education to be found on line in superannuated journal articles enjoying a too long afterlife, and in some stark publicity for CE services. I find it impossible to determine the present public and public image of Conductive Education, but I suspect that 'walking' as a goal still features high within this, whether achieved or not, perhaps to the exclusion of higher-order goals and achievements.

There is of course no single answer, perhaps no sole principle to be advanced here, that is variously valid in the light of different conditions, severities, complications, ages, personal circumstances, specific situations, different social contexts, and of course individual goals, values, attitudes etc. But this variability is itself a essential factor to be factored into any discussion of the relationship between walking and Conductive Education (and of course other interventions too).

Questions, problems, challenges that have been raised over the years around walking and Conductive Education, however, have not been publicly pursued or resolved. I know that there are probably as many responses and formulations to be presented as there are providers and users of conductive services, and I have heard some very perceptive and ingenious analyses.

It would be jolly to edit a book collecting together contributions around this topic from people within Conductive Education, to include items on varying experiences and representing a variety of positions – not just jolly to do but also perhaps offering a small but important contribution to an urgently required relaunch of Conductive Education on to the public and professional scene as a mature and articulate alternative.

Now, there's the basis of a book proposal for you.

It would be nice to see possible compilers or contributors take up this gauntlet.

Normal health warning: no breath-holding, please.

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