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Posted by Catriona
on July 2, 2009, 21:42:07, in reply to "Re: Finger/Toe Clubbing"
82.27.178.219
Pippa - I do agree with you about how these things are described - it's important to let health professionals know what the impact is of the words they use. Totally agree that it's not about being PC - it's about recognising difference and valuing people regardless.
It seems obvious to me that there is a big difference between an underlying cause of disability, such as Rett syndrome in Amy's case or Trisomy 21 in Leo's, and a medical condition such as their heart conditions. The former is simply something that they (and we!) live with - it might serve to explain why particular things go wrong with our little ones but it can't be 'treated' in itself. So while Amy is obviously a 'cardiac patient', I'm not certain at all that she's a 'neurology patient', now that the diagnosis has been made, because she's not being 'treated' for Retts - all the diagnosis does is give us an explanation for why she is the way she is, and help us know what to do for her now and what we might expect in the future.
The 'social model' of disability is something that I'm increasingly thinking about - and trying to explain to others (from doctors to random members of the public). She doesn't 'suffer from' Retts, she 'lives with' it. And we deal with it not through medication and surgery, as with her heart, but by trying to make it possible for her to have as full and interesting a life as possible, with the minimum physical discomfort. But that requires more than just our own efforts as parents - it needs society as a whole (institutions such as schools, parks, etc), plus individuals, to recognise our children as fully functioning members of the communities they are in and deserving of whatever assistance is needed to help them participate in those communities. Does that make sense?
Catriona
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