Rejecting the concept of 'carer'

by Rachel Perkins

Extract from Openmind 109, May/Jun 2001

If you are sane, you have mothers, fathers, siblings, partners, children. But if you have mental health problems, then these people become 'carers'.

The ordinary terms used to describe our relationships - relatives, friends, partners - imply a whole host of kinship, social and emotional connections. To be a relative or a friend is to enjoy a reciprocity - a kind of equality....

In the move from relative or friend to 'carer' this reciprocity is lost. The other party in the relationship is not a carer - they are 'cared for'. To be 'cared for' is hardly a positive, affirming and valued role. A clear hierarchy of competence is created: the more competent 'carer' looks after the less competent 'cared for'.

And then a great deal of attention is paid to the 'burden' that those of us with mental health problems impose on our 'carers'. Seemingly endless studies have been conducted to explore the multiple manifestations of this 'burden', and researchers have developed numerous instruments for measuring it....

I am also not pretending that being around someone in crisis is easy. There are times when I'm horrid to be with. Times when those around me definitely need a break. But I also have many skills, assets and abilities that I bring to those with whom I share my life.

Over the last four decades an almost exclusive focus on the burdens experienced by families has blinded us to the positive contribution to family and social life those of us with mental health problems can and do make.

I know of only one systematic study that looked at the contribution that people with serious mental health problems make to their families - a piece of research that I think should be compulsory reading as an antidote to the 'burden of care' literature [Greenburg, J.S, Greenley, J.R. & Benedict, P. (1994) 'Contributions of persons with serious mental health problems to their families' Hospital and Community Psychiatry 45, 475-80]. A large-scale study of some 725 families found that, in the vast majority of families, all parties agreed that help and support was not a 'one-way street'.

People with serious mental health difficulties made a range of positive practical and emotional contributions to family life, from assistance with the household chores, through looking after relatives when they were ill, to providing a listening ear and companionship.

This research conclusively demonstrates that the relationship between people with mental health problems and their nearest and dearest cannot be reduced to 'carer' and 'cared for'. Reciprocity continues to exist where a member is disabled as a result of their mental health problems.

The focus on 'burden' is likely to create a vicious circle in which disability is increased. If you and your family are told that you cannot do things, need looking after, then two things are likely to happen. First, your family may well give up expecting you to contribute and therefore deny you opportunities to do so. Second, if no one expects anything of you, you are likely to conclude that you have nothing to give. If you stop trying, everyone is confirmed in their belief that you are incapable.

To be sure, there are likely to be times when any of us, whether or not we have mental health problems, cannot contribute as much as we would like. But this does not mean that we are permanently and irretrievably incompetent in all facets of relationships.

We could attend far more to what people can contribute, rather than always stressing what they cannot. Then we might find that many of us, most of the time, could do a great deal more.