The Simon Heng column

Someone told me about Philip,* one of my physically disabled
colleagues. He’s been living independently for several years,
after, among other things, suffering a severe stroke. Using direct
payments, he has organised his own care and, although he doesn’t
have a job, he has been active in community affairs.

So it came as a shock to find out that his world had been slowly
crumbling around him. Philip had developed a pressure sore that had
eventually eaten a hole inches deep in one of his buttocks. He also
began to develop other health problems, which meant that he began
to struggle with the organisation of his care, of his life in
general. A few weeks ago, he needed to be admitted into hospital.

In the meantime, his ability to cope with his finances
deteriorated. His carers weren’t getting paid properly, household
bills were unpaid. It became more and more difficult for Philip to
direct his carers to look after his home. Social services have
taken over responsibility for his care, suspending his direct

How did things get so bad for this man? Who else noticed that he
was struggling to keep his life going? Did they try to intervene?
For all I know, Philip may have chosen not to look after himself.
He may not have had the skills to do so: he may have become
depressed about his situation, and stopped trying to cope, like so
many people acquiring a disability.

I rehabilitated in a spinal injuries unit which taught me much that
I needed to know about looking after myself. Not everybody (even
physically disabled) gains such an opportunity. And nobody teaches
you how to cope emotionally. So when things start to go wrong, who
do you turn to? When do you admit that you can’t cope?

I’m worried that this could happen to me. I seem to be competent
and confident, but what if I gradually lost even some of my ability
to cope with the intricacies of my life? Is this a vision of the
future for people like me?

* Not his real name.

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