Friday, April 10, 2009

Real Fools Or Real Food And Chocolate Fool!

Let's talk about food again!

Hari, being the foodie that she is, delights in the whole food experience. Taste, texture, aroma, anticipation etc.

But one problem that has been central to her feeding on a regular basis is the attitude from doctors to Hari and food. Not just in their use of maliciously accusing me of not feeding her but also in their own inability to understand that disabled people are actually capable of eating!

They just see Hari sat in her wheelchair and read the words cerebral palsy in her notes (if they bother to read them at all) and assume that she is incapable of eating or incapable of eating enough.

They should see her in action!

The current trend in medicine is that everyone with any severe form of cerebral palsy should have a PEG feeding system - a surgically implanted tube that allows liquid feeds to be fed directly into the stomach. (This differs from the NG tube Hari has for fluids.) This trend ignores individual need and directly contravenes the human rights of those who are forced to have PEG feeds unnecessarily.

Another mother summed it up wonderfully in relation to her son - 'he misses out on so much and they're not damn well taking that away from him!'

It has not gone unnoticed that in recent years certain doctors have been trying to manipulate Hari into having a PEG system. They have failed to address Hari's rights as an individual, her rights as a human being and her rights as a disabled person. They have assumed that Hari can not eat - they are wrong!

Hari loves food and that enjoyment should not be taken away from her - nobody has the right to deprive Hari of food - especially not cheesecake, boozy cake and chocolate trifle!

Different doctors have taken different approaches to this but one noticeable contribution from Liz Crowne was that I should give Hari less real food and use nutritional foods 'because it's easier'.

It isn't about what's easy for me - it's about what is best for Hari and what Hari wants.

Unsurprisingly Hari wants real food!

So she will continue to eat cheesecake, boozy cake, chocolate trifle, anything that involves smoked salmon, anything that involves garlic -especially cream cheese with garlic and anything else that takes her fancy.

Anyone trying to stop her had better have a damn good excuse!

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