Mad Studies: Barbara on Beresford
Barbara Norden is one of the members of the Birmingham Mad Studies group, facilitated by Pink Sky Thinking.
Barbara is a Service User Activist who has been active within the movement since the 1960's. Below she provides a synopsis of the paper 'Public Participation in Health and Social Care: Exploring the Co-production of Knowledge' written by Professor Peter Beresford, as well as her own critique on this paper.
In this paper, Peter Beresford is expressing a concern about the ways in which mental health service user involvement is currently being used by the services, and what this means about the way our democracy works.
The paper includes historical evidence which supports Beresford’s view that Western democracy has developed essentially as a representative and not a participative democracy – we elect people to make decisions for us, and our participation in making any of these decisions is very limited.
Beresford’s view is that service user involvement, as currently practised, is looked on as non-political, and is generally only discussed within the services the Government is providing, or within academic research. He is suggesting that in a true democracy, our opinions about service provision (and other relevant matters) should be expressed in a participatory way - that we, and everyone else, should have more power over the way we are governed.
He has identified four main phases in how he believes our democracy should develop:
1. Even in our representative democracy, all of us should have better representation, and our social needs should be regarded as rights
2. Our democracy should involve a lot more community participation
3. Specifically, more participation is needed in health and social care
4. The state and the service user led projects will be in some conflict while this develops.
Beresford mentions “deliberative” democracy, which includes local committees and citizen’s juries about mental health provision. He regards this as a small degree of progress from representative democracy, but as not going far enough, as being co-opted by the services, and as not tackling discrimination against minority groups, who, he thinks, are not being well represented here.
He states that for a long time in the 20th century, it was public policy to treat anything about health as politically neutral and to be discussed by experts, not by service users. Although service user involvement has now become part of public policy, Beresford believes these groups are often “tokenised and co-opted” by the system, may fail to include users from minority backgrounds, and do not receive the financial support or recognition they need.
What follows is a summary of the four phases of development outlined by Beresford.
Beresford gives a brief history of the development of British democracy over the 20th century – how different groups were gradually included in voting, with some reference to the way this developed, of did not develop, in other countries. He then describes the introduction of “social rights” after World War II – housing, health, education, work and benefits – which promoted more equality but still discriminated against minorities.
In the 60s and 70s there was greater recognition that poverty, deprivation and discrimination was continuing despite the welfare system. There were attempts to re-educate people and improve their skills, but these were often top-down and did not always include the opinions of the user. There was some involvement of people in setting up these processes, but people lacking literacy and other skills were often excluded.
“Reform” of health and social care in the 1990s included more provision for service user involvement, but ironically, it was also related to privatisation. Disability rights organisations were demanding more equal access, promoting independent living and insisting that disabled people were equal; similar campaigning occurred in mental health survivor groups and other groups. However, the involvement of members of these groups in expressing opinions about service provision seemed to be based on a market research model, rather than an equal participation model. This was the result of a takeover of “neoliberal” (i.e. neo-conservative) values.
In recent times there seems to have been more promotion of service users’ “rights” as consumers, while at the same time, neoliberal economic policies and “austerity” cutbacks have reduced people’s rights to access services. Ideas derived from service user engagement, such as self-management, peer support and recovery focus, have been reinterpreted by the system: peer support workers can be used to replace better paid care workers; recovery can be a way of saying services are no longer needed.
In spite of this – or perhaps because of it – there has been an increase in campaigning, a greater level of user involvement in training professionals, and of user involvement in research.
What follows is a description of the social movements of the 1960s and 70s, many of which were set up by excluded minorities, including people with disabilities and mental health conditions. Some of these movements are still with us, despite austerity and neoliberalism, and have developed newer strategies that promote democratic participation. In the following sections Beresford gives some details about the way these campaigns have survived and progressed:
Widening Involvement and Campaigning, Challenging Exclusions:
The disability movement over the years developed an acceptance of the diversity of those with disabilities. A disability action group called Shaping Our Lives produced a study on the way diversity can be restricted and how to overcome this. The exclusion that needs to be challenged can be on the basis of gender, sexuality, ethnicity, class, culture, belief, age, disability – what we now call “protected characteristics” – or for other reasons: where someone lives, what language they speak, whether they are seen as able to participate, whether their contribution is seen as “too difficult”.
Involvement in Professional and Occupational Training
This now takes place in a number of countries, including the UK, for the most part in universities. In a project called “gap-mending”, developed in Sweden, service users who are there to engage with social work students are trained alongside them and receive a qualification.
Involvement in Research and Knowledge Production
Traditional research methods were for a long time regarded as objective, but this has been challenged since the 1970s by feminists, disability activists and mental health survivor groups. Beresford considers this type of research to be “biased on the side of the service system”. More recently, service user involvement has had considerable impact on the way research is conducted. Nevertheless, Beresford expresses doubts about the independence of the UK process called “Patient and Public Involvement”.
The Development of “Mad Studies”
This is an international movement that challenges the biomedical model of mental illness and includes a wide variety of academic subjects based around people – anthropology, sociology, disability studies, and other subjects. It bases much of its work on “first person knowledge” – and not only that of the service user, but of the worker, the carer, the researcher.
Beresford’s main conclusion is that inclusive and democratic service user participation must be given greater recognition – and that there must be adequate funding of user-led organisation, schemes and research projects.
Beresford is talking about the disempowerment of people who differ from social norms, but he is also tackling the long-standing question of whether “The State” is preventing “The People” from having power. Sadly, there has never been a straightforward solution to this, and I don’t think Beresford has found one either.
History suggests that “The People” have frequently been dominated by charismatic individuals, or by movements that will only let them “deliberate” if they agree with the values of the movement. Arguably, our democracy was developed as a way to counter this, by setting up a system where we vote for people to represent us. The representatives then appoint a kind of ruler – PM, president, etc. -- mainly because if they don’t, they spend a lot of time arguing and not reaching decisions. Long ago it was concluded that in practical terms, “someone had to take charge” and get on with what needed doing.
In Britain, MPs appoint a Prime Minister who can make decisions without asking them, although they can un-appoint that person if they have good reason to (this has now become part of the Brexit debate). In America, while the people are voting, a number of specially elected representatives vote in the President, and in 2016 their vote trumped (yes, seriously…) the people’s vote.
What Beresford has been clear about is that this system continues not to listen to people who differ from the norm, even when it tells us it is doing that -- nor is it listening to those who can’t access resources that empower them to be heard. I am sure that many of us who feel disempowered by all this would prefer a participative, deliberative democracy – but how do we achieve such a thing while avoiding the domination, autocracy and violence that has taken over idealistic political movements in the past? And can we find better ways to deliberate while someone gets on with doing the necessary work?
Meanwhile, Government continues to remove resources for care, support, and equal access, never mind representation or deliberation. It seems that all we can do for the present is to continue campaigning, setting up movements, and shouting loud enough to be heard.
Many thanks to Barbara Norden for her guest writing on the Pink Sky Thinking blog.