The conscious carer

People who find themselves looking after a member of their family don't necessarily come to regard themselves as carers, certainly not automatically. They are just looking after a member of their family who needs care. What could be more natural than that ?

But there are implications of being in this situation which become increasingly obvious, over time. They vary, of course, from case to case. It may be that changes have to be made to the carers' work pattern, even to the extent of having to give up employment completely and, consequently, live on a very small income. There may be implications for the carers' own health, or for their life-style and so on. Overwhelmingly, these are adverse changes brought about by becoming, sometimes in an involuntary way, a family carer.

The realisation that one is in a particular situation frequently leads to looking for help and support, advice and information, and so to contact with other carers. This may be through a carers' charity of some kind, which provides much of what carers need in the short term and strengthens their self-identification as one of a number of people in similar circumstances. 

Some carers may never get to this stage and continue to remain isolated. Others may remain at this stage and never develop beyond it. Some may be happy that they found the carer charities, but develop some sense of unease. After all, valuable though the service they give may be, they are not run by carers for carers. Their role is limited and circumscribed by the fact that they are charities. They obtain their funding, probably, partly from government sources. Their campaigning role is limited by virtue of the fact that they are charities.

Carer-led groups are the inevitable consequence of this reality and there are a number of them now in existence. However, my experience is that only a minority of their members are activists and also that they tend to be dominated by rather egocentric personalities. Perhaps this is inevitable, to some degree.

Those of us who want to see carer-led organisations become larger, with a more extensive activist base, and democratically controlled are up against a serious problem.

All movements are likely to find themselves dominated by some kind of elite caucus, if they allow it to happen. Political parties are notorious for this. However, it is possible to achieve more accountable forms of organisation. If carers want to develop a movement which can represent them and negotiate on their behalf, like a trade union, then they should consider democratic practice to be an essential part of what they stand for.

In the present circumstances it is inevitable that a small minority of activists will seek to represent carers to the government and its agencies, usually in competition with each other. However, in my view, that is no way to raise the awareness of carers to the reality of their situation. I suggest that that rather than dissipate our very limited energy on making representations to those who are determined not to hear us, we would be better advised to seek to contact and communicate with the large number of carers who are presently beyond our reach. Consciousness raising should surely be our priority.