The growing acceptance that both ‘the public’ and ‘patients’ should play a part in decision making about health policy and services has led to an expansion in the types of spaces in which public officials come face to face with those who use their services. Questions about the way in which those spaces should be designed in order to facilitate effective dialogue have exercised both practitioners of participation and researchers who study them.
I have been both studying and playing a small part in developing such initiatives for over 20 years. One of the issues that has come to interest me is the way in which emotion is handled in these contexts (Barnes, 2008).
Many of those who take part in participation initiatives do so because health services have failed to live up to their expectations in terms of delivering the care and treatment they expect. They may be frustrated or angry that services are disrespectful or unresponsive. Some feel that they are not recognized as autonomous agents capable of making their own decisions. For some, particularly people who live with mental health problems, experiences of services are compounded by discrimination, stigmatisation and injustices in their daily lives. The anger and hurt that can result may be accompanied by other emotions: pain and fear resulting directly from illness and its consequences, shame and self loathing amongst some who need help as a result of physical or sexual abuse.
When people who share such experiences organise together to campaign and provide support for each other those emotions can be harnessed for political and personal benefit. For example, Taylor (2000) identifies the way in which the development of solidarity amongst mothers experiencing post partum depression elicits what she refers to as ‘vitalising’ emotions – emotions such as pride and joy with the group’s new positive collective self definition. Similarly, anger at services experienced as ‘disempowering’ (Barnes and Bowl, 2001) has generated a movement amongst mental health service users that has impacted on the way in which services are provided and had a transformative effect on individuals who have achieved recognition through their work within the movement.
But what happens when people who have taken part in these patient or user movements get involved in officially constituted participation initiatives? Often these are designed by reference to principles of deliberative democracy and assume ‘rules of the game’ familiar to public officials working in large bureaucracies. These principles emphasise the value of informed rational debate. In practice, this has sometimes meant those seen to have a ‘special interest’ in the topic being deliberately excluded from the process, and institutional rules may be invoked to define the terms on which dialogue should be conducted. These terms will often rule emotion ‘out of order’ and officials can find it hard to deal with contributions that express the emotional content of service users’ experiences (Church, 1996).
I want to suggest that ‘good deliberation’ should be capable of encompassing precisely the emotional experiences that motivate participation. Public participation in health should be capable of engaging not only with strongly held views based in different value positions, but with the hurt and anger of those who have experienced the impact of ill health and poor treatment. This does not mean that ‘rational argument’ should be replaced with a slanging match, but it does mean that the tendency to avoid engaging in issues because they are too emotionally charged, or to rule the emotional content of experience as outside the remit of public deliberation, cannot be acceptable.
One way of thinking about this is to apply principles deriving from an ethic of care to consider what carefull deliberation might mean. Deliberative practices which enable dialogue about the impact of poor health, old age or mental distress, can encourage attentiveness to such experiences and give recognition to them. Emotional expressions emphasise the significance of the issues that are the substance of debate. Such emotions provide important information necessary to determine action to produce positive outcomes. Public officials then have a responsibility to take action on the basis of this.
The focus on positive outcomes reflects the importance of the principle of competence. An intention to enable people to take part in policy making, and even taking responsibility to provide opportunities for this to happen, but then failing to conduct deliberation in a way that enables people to feel their contributions are recognised and valued, means that the purpose of participation is not fulfilled.
The principle of responsiveness recognises that those who are very young, old, frail, or ill are more vulnerable than many of those who make decisions about their care. Thus it emphasises the importance of understanding their experiences rather than assuming we can ‘put ourselves in their place’ and so speak on their behalf.
Emotion cannot be ruled out of order and public officials cannot claim that good manners dictate that strong feelings be left at the door of spaces in which patients and the public deliberate on health issues.
|Author :||Marian Barnes
Professor of Social Policy
University of Brighton
Barnes, M (2008) ‘Passionate Participation: emotional experiences and expressions in deliberative forums’ Critical Social Policy, vol. 28(4): 461-481.
Barnes, M and Bowl, R (2001) Taking Over the Asylum: empowerment and mental health, Basingstoke, Palgrave.
Church, K (1996) ‘Beyond “Bad Manners”: the power relations of “consumer participation” in Ontario’s community mental heath system’, Canadian Journal of Community Mental Health, 15 (2): 27-44.
Taylor, V (2000) ‘Emotions and Identity in Women’s’ Self-Help Movements’ in S Stryker, T J Owens and R W Whites (eds) Self, identity and Social Movements, Minneapolis, University of Minnesota Press.