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How do you deal with feeling inferior in a society that devalues disability?
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Name: Andy Berry
Email: andy@tof.co.uk
Date: 07 Jul 1999
Time: 21:56:08
Remote Name: bar-ns-1-42.jvlnet.com
I’m worried…
There’s a debate going on in the UK about when doctors may withdraw or withhold treatment from people in their care. It’s being led by the British Medical Association, and they are trying to argue that, in certain circumstances, artificial feeding or hydration is a treatment. This is scary stuff!
In the UK, we have believed for the last 50 years that health care is free and universally available – but limits to funding now mean that certain treatments will become unavailable or severely rationed. There must be a suspicion that the treatment debate is influenced by a feeling that, if treatment is limited, it should be given to those who will ‘benefit’ from it and that other people with a ‘poor’ outlook will be allowed to die. Again, scary stuff!
In this article, I’ll consider whether such issues need concern people with disabilities. After all, we’re always told by activists that we are not, in any sense, ‘sick’ and that it’s society fault that we are ‘dis-enabled’.
Let’s start with a grey area – the very young, disabled person. Most children with cerebral palsy are poorly when they are born. They will be in hospital (a place for sick people) and looked after by doctors (who look after sick people). By any reasonable definition – they are sick.
Later, they go home. At that point, you could say that they are ‘disabled’. But, what happens if ‘treatment’ continues? Are they sick while receiving treatment and disabled otherwise?
Again, consider a person with a progressive disability. To start with, after diagnosis, such a person may receive little or no medical intervention – they will feel themselves to be ‘disabled’. Later on, they may start to feel ‘ill’. But, at what point would society say they are sick? I would suggest that this only occurs right at the end of life – until then, they are just disabled.
So it seems that, for most of your life, ‘sick’ and ‘disabled’ are independent states – you can be disabled, sick, disabled and sick or neither.
From a medical point of view, there is a counter argument that says disability is a long-term illness – it’s your ‘usual’ state which further illness can be temporarily imposed onto.
But, that definition is dangerous – it could allow doctors to say that we are always in their care and therefore, allow them to withhold treatment when our ‘outcome’ is less than ‘acceptable’.
We must defend the independent nature of sickness and disability if we are to have any hope of countering the gradual encroachment of the ‘quality of life’ argument for quietly disposing of an inconvenient minority. To be explicit, I’m saying that doctors have no right to determine what happens to disabled people – we’re not sick!
As a postscript, this may only buy us a few years. Before long, the argument about the cost of ‘caring’ for us will no doubt be raised. But, let’s tackle that one when it comes!
Copyright © 1999 Andy Berry. All rights reserved.
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