Bob Sapey, a participant at the first seminar, kindly provided this fascinating piece on language in healthcare.
It is possible that in replacing undesirable labels, we risk creating new ones that become signifiers of the devaluation we were trying to combat, but this is insufficient reason for not acting to better the impact of our language in the present as unequal power relationships may be maintained by our language.
In the field of social work the term ‘service user’ came into use following the implementation of the 1990 NHS & Community Care Act in April 1993. In that new world of social welfare based upon notions of consumers rather than clients and in which community care was portrayed as a desirable service with choice rather than the state controlled safety net of the National Assistance Act, new labels were required and by the end of that decade ‘service user’ had emerged.
However positive the intentions of this change, it did not take long for the term to assume negative connotations; I recall a student on placement in a CMHT in 2000 telling me that in the canteen culture of this team, the term had come to mean the people who used up services and caused shortages, much as the term ‘bed blocking’ blames older patients for political and professional failures to adequately resource and manage health and care services.
1997 saw a significant change in the way the Department of Health used the term service user. Whereas prior to this time the Social Services Inspectorate had given advice on how to work with the inherent tensions between disabled people and carers, from this time policy documents always referred to service users and carers, reflecting the new government’s aspirations in terms of consultation and co-production. Policy forced the two groups together and began to establish them as a single group in the minds of professionals; the tensions were meant to have disappeared in the new reality constructed by this government.
Shaping Our Lives, a national service user network that wishes to promote a positive view of service users as active, say that the term can be used to restrict a person’s identity to one of passivity in an unequal relationship. Fundamental to this perspective is that individuals should be free to determine if they consider themselves to be a service user, this is not the role of the service providers.
Some individuals are comfortable with the service user label, while others are not for a range of reasons including simply finding it unnecessary. Many people have argued for other labels that they see as more positive such as survivors of the mental health system, or disabled people, or experts by experience, each of which reflect personal and political experiences. Survivors is a term borne out of experiencing the mental health system as brutal and unhelpful; disabled people reflects an experience of society as unequal and disabling, as having been constructed by non-disabled people for non-disabled people; experts by experience is used to create an equality with experts by profession in situations of co-production.
Language changes as the meaning of words change. I recently co-edited (with Helen Spandler and Jill Anderson) a book called Madness, Distress and the Politics of Disablement. When we first got the contract we were not permitted to have the word Madness in the title (although clearly we made the argument for its inclusion later). It was considered to be demeaning rather than reclaimed. Throughout the book we used the term ‘madness/distress’ in order to accommodate different identities and whilst this might be viewed as grammatically clumsy, it was meaningfully, politically and socially essential.
I think the power of language is probably in the way we use it, rather than in the innate qualities of a word. But because of the way words have been used, they may assume certain meanings of which we need to be aware and wary.
I am a member of CCrAMHP (Critical and Creative Approaches to Mental Health Practice) which is a group of people who come together to discuss ideas. The group consists of people who have and do not have experience of mental distress and over the past 5 years this has included art, community, medical, nursing, psychology, social work and teaching professionals, school and university students, and people who were not employed.
Before retirement I worked as a university lecturer and prior to that as a social worker. I have been involved with the disabled people’s movement for over 30 years as a social work activist, a writer and a researcher. In the last 10 years I have had similar relationship with the Hearing Voices Network. My experience of working with disabled people and with voice hearers has predominantly been one of being invited into activities that they control and of sharing my knowledge or skills.