“Celebrating Self Help”

© Nicki Hastie, while working as Information Officer for Self Help Nottingham

Opening presentation at Women’s Health 2000: a celebration of self help event organised by Women’s Health (a London-based charity which ceased to exist in 2007), Saturday 6 May 2000 at London Voluntary Sector Resource Centre

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Introduction

It’s exciting to be asked to speak at this Celebration of Self Help event organised by Women’s Health. Since I first heard about the day it has held a real significance for me personally and professionally. There is the clear connection with my paid work as Information Officer at Self Help Nottingham – a development agency dedicated to supporting self help groups – and it is that experience which really brings me here. But it goes beyond that.

One of the reasons this event is so important is that finding time to concentrate on celebrating self help activities is very rare. Usually, you’re kept busy participating in self help – actually doing it. Everyone here who is involved in self help groups and networks will know that most often you are engaged in the process of how your groups work and all your efforts and energy are concentrated on keeping them going. There isn’t always time for reflection, few chances to take pride in personal and group achievements outside of the group itself, and probably even less opportunities to think about the wider significance of self help – what it is, why it works and how it is special.

The other very significant perspective of today’s event is the focus on women’s health. I have been involved in women’s health promotion and community projects for the last 12 years. Some of these operated as self help groups and support networks in which I participated because of my own experiences and support needs. My involvement in other projects has been as a paid worker employed to support and service similar groups. My personal experience of self help has everything to do with being a woman and, more specifically for me, being a lesbian.

Some might see self help as primarily a woman’s issue. Research has shown that, in general, there is a far higher number of women involved in self help than men. A recent survey of self help groups in Nottingham, for example, found that the gender balance of those involved in self help groups is 63.2% women and 36.8% men. This percentage of 63.2% for women may even be a little low as the sample could have been skewed by the high proportion of men in one cardiac group. This is also the group with the largest membership amongst all local groups. As you would expect, there are many more women-only groups or groups meeting around women’s health issues in the Nottingham area than there are groups focusing on men’s health. The Directory of groups we put together in Nottingham has 18 group entries listed under “Women” in the Index and three under “Men”.

Women’s gynaecological and sexual health needs account for some but not all of this. There are many ways that women come to self help. This may be for direct support around a specific physical or mental health issue, but for many women the route to self help is also linked to a long history of discrimination within mainstream health services and the tendency for women to be pathologised through our bodies. Other women will come to self help through their perceived role as the primary carer, as mothers, as partners, as women dealing with oppression and with subjects that are taboo, with abuse, with violence, or through the many social, cultural and political identities that we claim for ourselves in defiance of prejudice.

Self help has a particular relevance for women and it has been recognised that many health self help groups arose alongside the Women’s Movement. Women’s relationship to self help and the part that self help plays in promoting women’s health, in particular, is also something that needs celebrating, and in all its manifestations. That’s the real reason I’m excited to be here because that’s where my personal and professional commitments meet.

I want to explore three main themes in this presentation, to help introduce what I think may be some central issues for the day. I’m going to:

• think a bit about how self help works and how self help groups can best be supported;
• consider the benefits of networking;
• consider how we can raise the profile of self help, and thereby continue its celebration.

So, what is self help?

It’s clear that it is a major social phenomenon both in the UK and worldwide. Drawing on a survey of groups in the Nottingham area it could be estimated that there are 23,600 groups in the UK, with over one and a half million members. Elsewhere, it has been estimated that there are 1,000 local self help groups in the UK per million population – if that is true that would mean as many as 49,000 groups. It’s hard to verify any of these statistics, but participation in self help groups continues to grow at a rapid rate.

The philosophy of self help is one of equality and empowerment. It is a unique form of support based on mutuality and reciprocity and is linked to an improvement in self-esteem and personal growth. Individuals involved in self help are helped and enabled themselves through the process of helping others. It demonstrates that we can look to ourselves as powerful individuals with the resources to find our own solutions.

Self help is entirely different to professionally-led support. The difference in the self help group is the experiential knowledge of its members. There is a basic principle of democracy in the group that all members have direct personal experience of the issue that the group is based around. This distinguishes self help groups from therapy groups or other professionally-facilitated support groups where there will always be a power imbalance in the control and leadership of the group. Ownership of the self help group is shared by its members. These principles of equality and empowerment are recognisable as ones which underlie the Women’s Movement – or ones that we’re proud of when feminism is working well.

The concept of self help and the principles of a self help group seem obvious when you are involved in it. The process and its benefits then seem so clear. But explaining it to other people and encouraging new members to get involved isn’t always easy. When you’re put on the spot sometimes and asked what self help is, it can be a really difficult concept to describe. Especially when working in a development agency, where I’m engaged in promoting self help in general. People want to know why any activity in which they are helping themselves doesn’t count as self help.

How can we celebrate self help unless we can positively identify it and actively promote it? Groups experience similar difficulties. Publicity is often the main activity that groups want help with – how to present a positive and welcoming image, how to encourage others to get involved, and how to promote what it is you really do.

We have started to use a new descriptive phrase at Self Help Nottingham. The aim was to help give some vision to our work. And also to be less wordy in our explanations of self help to try to capture succinctly what is distinct and special about self help. Believe me, it was no easy project. Because of my job description, I had the task of trying to create an “image” for self help for new display boards which would act as a ready-made promotional tool.

I do some of my best thinking out of work. So after a couple of bottles of wine one night with my partner, the snappy slogan we came up with was:

Shared experience makes the difference

This phrase sits alongside an image of a summer meadow – to represent growth, independence, nurturing, diversity, warmth, optimism – an organic image to display all that is positive and developmental about self help. To be really fair to origins: the words are mine; the image was my partner’s bright idea. I’d love to show you it in its finished form but I couldn’t get the display boards on the train with me. I’ve got pictures if anyone wants a look later in the day. The whole image seems to be capturing people’s attention whenever we take it out and about, but it’s the words which are easier and more flexible to use in an everyday context.

I’ve come to think of “Shared experience makes the difference” as working on three separate levels:

It works:

• In support of the individual participating in self help
  it is their own experience which leads them to want to find others who have shared that, or a very similar, experience. The difference for them is knowing that only someone who has gone through it, or is going through it now, will really understand.
• In support of the self help group
  it is the shared experience of members of the group which gives it the identity as a self help group. It is this which makes it different from other forms of group support, e.g. therapy or other professionally-facilitated groups. It is shared experience which makes the self help group distinct from other community groups or voluntary action initiatives. Individuals in those other types of group or community network may have shared interests, but they don’t all have direct personal experience of the issue they are mobilising around.
• In support of the philosophy of self help in general
  At Self Help Nottingham, where one of our roles is to advocate the benefits and ethos of self help, “Shared experience makes the difference” helps us to promote self help as a philosophy. It helps us to explain to others what makes our organisation distinct from more generalist voluntary sector development agencies or community development projects. It is this mutuality and the collective experience in self help groups which is important, and why self help is often referred to as mutual aid.

Because the term “self help” is used in a variety of contexts, it can be helpful to define clearly what is meant by self help and to look at what fits within the boundaries of a self help group. Most people know that you can read a genre of writing called a “self help book”, but this is an individualistic activity concerned with self-improvement, and bears no relationship to the shared and collective experience of the self help group.

At Self Help Nottingham we have had to develop a definition to guide our own work and support to groups. Not every group has to conform exactly to this definition, but having some boundaries is really important.

This is our definition:

A self help or mutual aid group is made up of people who have personal experience of a similar issue or life situation, either directly or through their family and friends. Sharing experiences enables them to give each other a unique quality of mutual support and to pool practical information and ways of coping. Groups are run by and for their members.

Some groups expand their activities: they may provide, for example, services for people who face a similar issue or life situation; they may campaign for change. Professionals may take part in the group in various ways, when asked to by the group.

Some groups will hold regular meetings on a weekly, monthly or quarterly basis. Meetings may be in public venues, such as community centres, or in members’ homes. Other groups will maintain support through letter-writing, through a network of telephone contacts or through Internet news groups and e-mail.

This definition hasn’t been created from nowhere. It has come together over a period of time, based on our experience with groups since 1982 and it builds on definitions explored by self helpers in other countries. It is a definition that is now often quoted in research literature, especially when giving a UK context to self help.

You will notice that it has also been reviewed and amended over time. In March 1997 we revised the last paragraph to reflect the diverse activities and structures of self help groups. The more traditional image of self help is of face-to-face meetings, but there are many reasons why it may not always be practical to communicate in just that way. I’m aware, for instance, that the Women’s Health self help support network operates mainly through telephone-based support. New technologies such as the Internet are also being used more and more in self help. Although it’s only in the last year that we’ve really noticed local groups getting their own e-mail address or developing a website, electronic self help has been written about in America since the early 1990s. Many groups will use a mixture of contact methods.

It’s time I introduced you briefly to some of the main aspects of Self Help Nottingham’s work and why it is we feel we can make general and specific statements about how self help groups work. This will also give some background to the different structures which support self help groups in the UK.

Self Help Nottingham

Self Help Nottingham grew out of a recognition that self help groups will benefit from structured support and development. We help groups with:

• Publicity – all the ways that people find out about a group, from help designing posters to an entry in an annual Directory of Self Help Groups
• Practical support – e.g. finding meeting spaces, loaning equipment
• Group development issues – starting off, keeping a group going, communication, group dynamics, coping positively with conflict, an introduction to legal structures if a group wants to become more formal
• Training – for self help group members and for professionals wanting to support self help initiatives
• Information – including a telephone information line for people who want to know if there is a group for them, locally, regionally or nationally
• Publications – promoting and developing good practice
• Networking opportunities – for self help groups to network with each other and with the wider health and social care system.

Our services encompass all of the issues which are on the agenda for today. Self help groups retain their independence and autonomy and have access to resources to enable them to develop in the direction they choose.

You will probably judge by our name that we can only directly support new and established self help groups in the Nottingham area. We are a local organisation and registered charity, funded primarily through Nottingham Health Authority, but in many ways we are the closest there is at the moment to a national self help resource centre. We have arrived at that status, albeit informally, partly because the organisation has had inspirational leaders from the beginning. Some of you will have heard of Judy Wilson, who was one of the main writers on UK self help before she left the organisation in 1996. Our networks, both nationally and internationally, our publications, comprehensive resource collection of self help literature, and our grassroots experience with many different groups means that we get enquiries from all over the country and beyond.

There are very few locally-based services in the UK offering all these services to self help groups. Most often, groups can turn to a local Council for Voluntary Service (CVS) organisation for support, but few CVS’s have dedicated self help development workers. In November 1999, we estimated that there are only 22 development agencies in England which could be designated as a self help centre. When talking of a “self help centre”, I’m following the definition proposed by the Toronto Self Help Resource Centre in Canada. This is: where there is a worker dedicated to organising around self help in a local area and s/he produces information such as a directory of locally-based groups. Only 22 self help centres means there are many parts of the country where the true range of self help groups is hidden and undervalued. If you want to know where these 22 centres are based I’ll happily give you a list.

National single issue self help organisations are the other main service provider for locally-based groups. They will often provide a similar service for their affiliated groups and perhaps employ regional development workers who know the local groups well. From the list of participants for the day, I recognise that there will be women here whose groups belong to this kind of structure and know far more about this type of support for self help than I do.

I do know that more could be done to build stronger links between local generic self help development agencies and national single issue self help organisations. Local groups often need to draw on the expertise of both. Self Help Nottingham believes there is a need for a national self help centre to help promote the resourcing, support and development of self help groups. The level of interest in today’s event demonstrates a desire for networking and finding out more what each other is doing. And also what is going on across the country. Perhaps in thinking about how we celebrate self help and how we raise its profile, ideas will form today which can eventually contribute to a national strategy. Or at least you can start to develop your own wish list of what you’d like to see happen.

An event like today which bring groups together around some identified and common concerns is an excellent way of celebrating self help. It allows us to open up to new perspectives, to learn from each other and to really check out the range of groups that are available. Opportunities to share practical ideas with other groups or linking up at networking events for like-minded groups is an activity that Nottingham groups regularly tell us they want more of. We have been able to facilitate networking opportunities so far for groups who share an issue of visual impairment, stroke, cancer and bereavement.

These networks are possible in just the local area because of the large number of groups. For instance, there are 8 groups meeting around some aspect of stroke, and 15 groups meeting around different kinds of bereavement. People need options and people create their own if they are not already available. Everyone has the right to choose their own degree of involvement and in an environment which is suitable for them. Groups discover additional strengths when they come together, but their differences are also a measure of the success of self help.

I remember going to collect a fundraising cheque from a local council dignitary. They were making a contribution to the production costs of our Self Help Directory. This dignitary was amazed by the number and range of groups in the local area, but also a little concerned. Her perspective was that more groups equals unnecessary competition equals increased demand on resources equals inevitable financial wastage. She wanted to know why it was that everybody wanted their own group – why couldn’t they join an existing group? Why did all these people think they were a special case?

I replied by saying that it’s no easy step to decide to start a self help group. In supporting people to start up new groups, we don’t hide how hard it can be. We’re very clear that there are many factors which can get in the way of it becoming established and we recommend that people check out any related groups that already exist. But Self Help Nottingham will support an individual all the way if other groups aren’t appropriate for them or they have a new focus.

For all of us here, standing on the inside of self help, our commitments and priorities will be very different to those perceived by a local councillor or the statutory sector in general. In my experience self help groups make few demands for financial resources, often relying on member contributions only. We need all these groups.

We need many and diverse groups

Around women’s health, self help is so significant precisely because it allows us to carve out our own space, to set our own priorities, to affirm our own knowledge, celebrate and articulate our differences, away from the more familiar experience of being patronised and sidelined by the medical profession.

The power of self help is that we define our own concerns. We live with the issue. The issue – whatever that may be – is often not an easy thing to talk about. It isolates us, it can make other people feel uncomfortable when they’re told about it and that’s why we seek other people who will understand our particular situation.

A theme for this morning is telling our stories. One of the successes I’d like to celebrate through a story of my own is the fact that there are so many groups catering for so many diverse needs. People are empowered by self help by being able to get involved in the process in their own way. My whole commitment to self help continues to grow deeper because I am the partner of a woman living with breast cancer. As her partner, I live with my own experience of this cancer. As lesbians dealing with breast cancer, like all marginalised communities, we have some very particular issues that can not be met or understood in most environments. The silence and fear that the word cancer provokes is a barrier to communication with other people on top of society’s taboo on same-sex relationships.

I consider myself to be a very out and proud lesbian, but I have stopped myself many times from sharing my experience of my partner’s cancer, especially when talking to people living with their own cancer experience. Once I say that my partner has had breast cancer, I am quite clearly stating that my partner is a woman. I don’t always want to do this in quite this way. For one thing, I can anticipate that my sexuality (which isn’t at this point the issue) would take the conversation in entirely a different direction, and whether we want it to or not, get in the way of an already sensitised situation. The health issue itself isn’t always enough of a shared experience, because we all bring other perspectives, identities and cultural backgrounds with us which produces a need for even more specialist groups.

Some of these may be time limited and temporary. And that’s fine because the nature of self help groups is that they come and go. There is a fluidity to self help groups, new ones being invented when necessary. My partner is part of the development of a new support network because she got involved as a lesbian outreach and support volunteer with the national charity, Breast Cancer Care. She offers a form of self help from our living room through telephone support to lesbians who have had a breast cancer diagnosis and their partners. There are more options for everyone when the range of groups available are made more visible. That’s something that networking events can help to achieve.

Self help is an entirely flexible form of support which doesn’t have to depend on more formal structures and that’s why so many self help groups are enabled to flourish. Groups aren’t successful if they try to be all things to all people. No group can attempt to meet all needs. What all groups can do, though, is to recognise different needs and develop links out to a range of other groups so that individuals can be signposted appropriately if they ask to be. People will choose for themselves where they feel most comfortable.

Linking with Professionals

I’ve celebrated some of the successes of networking between groups. The other side of networking involves making links with professionals and some of the afternoon sessions today approach these issues. Developing links with health and social care professionals is often where more of the challenges come in. But there are also some clear and new opportunities for self help to get fuller recognition in the current health and social care agenda.

The potential of self help groups is being increasingly recognised in a policy context. All professional services are having to prioritise strategies which promote consultation, participation and user involvement. The new emphasis on democracy in health care by involving service users and local communities in decision-making suggests that self help groups will receive greater attention in terms of helping to build healthy communities. Self help groups are a popular starting place for professionals wishing to consult local communities and service users as they can offer a valued “collective” user perspective. There are certainly more attempts to seek out and value experiential knowledge generally.

In reality, I think the new policy framework presents rather more of a mixed bag of opportunities and challenges for self help groups and for self help development agencies. In placing greater emphasis and value on experiential knowledge, user involvement initiatives would seem to value self help groups and the self help group member. But self help could be in danger of being subsumed under something rather larger than itself. It is possible that instead of respecting the distinct nature of self help groups, the culture of user involvement will bring confusion about what self help groups are. Self help groups are not ready-made focus groups for professional consultation and can easily become overloaded and fatigued. The group, or its individual members, can end up being taken away from their original aims and mutual support function.

Some self help groups want to effect wider social change; others don’t. There are many benefits to be had on both sides from good, positive relationships between self help groups and health and social care professionals. Where I start to feel slightly cautious is when I see the potential for groups to be hijacked in the new partnerships agenda. The service user movement is a very different one to the self help movement. Through the process of participating in a self help group some individuals are empowered and encouraged to begin campaigning for changes in services. But this is usually a later development or an offshoot from the group, not the primary aim of a self help group.

It isn’t all negative, however. There is a genuine overlap between government policies and the activities of self help groups which does strengthen the cause. The main challenge for self help groups when entering into consultation processes is how to set the agenda so that it benefits the group and remains a truly two-way dialogue. The programme for the afternoon gives space to think about all these issues. One of the benefits of us taking time to celebrate self help is that we can be the ones to define the relevance of self help. You can say how you would ideally like your groups and networks to be viewed by the NHS and what the relationship should be. This is our chance to lead the dialogue on our terms.

Ideas for Celebration

How you celebrate self help depends on what you want to achieve and who it is you want to take notice. Last year, Self Help Nottingham designated the whole of 1999 as a Year of Celebration of Self Help. It would have been great to have launched it as a national year of celebration but the difference we really wanted to make was for the local groups in and around Nottingham.

As a celebration, we wanted to put an emphasis on some fun and social events for groups. A Sunday afternoon “Picnic in the Park” event, with entertainment provided by a local choir and a clown (who was also a self help group member when out of costume) went off particularly well. All self help group members had to do was turn up and dodge the raindrops. We know that this must have made an impact because one local group celebrating their fifth anniversary this year has decided to replicate the event for themselves as their main anniversary activity. We’re quite proud that they’re using the same venue, the same choir, and have even called the event again, “Picnic in the Park”.

Another event had more political and public significance when the County Council agreed to hold a civic reception for members of local self help groups in recognition of the Year of Celebration. Self helpers were the special guests and they were honoured and valued over the course of an evening, with food and wine provided all at the Council’s expense. That public recogniton of what effort goes into groups is what counted.

Other activities and promotional events took place throughout the year. And there were lots of ideas which didn’t come off. We haven’t yet held the inter-group quiz night. Or found a textile student to help co-ordinate a self help quilt project, where each group designs their own square or panel. No-one signed up for the Self Help Group “Question Time” which was supposed to follow the model of “Gardener’s Question Time”. And we haven’t yet had the touring photo exhibition depicting self help groups in action because we haven’t found the funding for the photos even to be taken. But we tried, and there’s plenty of time to do the rest of it. We’re always going to need to find creative ways to continue raising the profile of self help.

On the theme of celebrating self help I have a few key points that I want to leave you with.

I believe one important project is continuing to redefine all the ways that self help is powerful in women’s lives and that women are powerful in self help. Some commentators have criticised self help groups for being inward looking and fundamentally selfish as energy is focused on a relatively small number of people rather than looking out to the impact on wider society. I think that view stems from a real misunderstanding of self help.

We all carry our own unique perspectives with us wherever we go and in self help groups we are allowed to choose our own level of involvement. Self help groups place few expectations on individuals other than promoting a sense of shared responsibility for the group. In the self help group, individual experience is what counts, but through the activity of sharing stories about lived experience the individual and the group goes through a process of learning which develops a powerful collective resource for problem-solving and confronting the stigmas that society constructs around us.

If individuals want to, they will grow through the shared knowledge and understanding in self help groups to realise new aspects of themselves and identify new potential. I think it is very hard to deny the wider significance or the politics in that process.

There are many levels and possibilities for the promotion of self help if we explore all the ways in which “Shared experience makes the difference”.

Self help resource centres or development agencies have a central role here. They are really needed as encouragers and enablers of self help. They can be that extra step in realising the success of self help groups. They can be an agent for change and understanding between the informal, independent self help sector and the more bureaucratic institutions of the health service.

The barriers which keep the two sides apart can be crossed, but there is also a reality that clearly-defined boundaries are important for everyone. I find it helps to be really clear what my role is in different situations. When I am in a professional role, acting as a support worker to self help groups. And when I am a person in self help who can meaningfully share my own experience and properly describe my commitment.

I sit around the same meeting table as my partner at a local Cancer Forum. This is a forum led by users of cancer services and carers to help plan and comment on the delivery of services. Most people around that table don’t know that we are partners and they don’t know my particular experience. I am not there as a carer. I am there because I am employed by Self Help Nottingham to facilitate the involvement of self help groups in this process. My partner is there because she lives with cancer.

There are some interesting challenges for everybody in firstly creating and then deciding when to maintain and when to cross those boundaries. I felt it was wholly appropriate to merge my roles in describing my experience of self help today.

I’ve mentioned boundaries because successful contact and communication between self help groups and the National Health Service will depend on each of us knowing what our agendas are and feeling strong and secure about the reason we are there. Self helpers have a lot to teach health and social care professionals about appropriate links and styles of communication. Self help groups will be increasingly invited into the new user involvement agenda. When engaging in this process explicitly as members of self help groups you need to keep emphasising that that’s who you are. You are not just another face. Your experience is part of a collective knowledge and understanding.

Because I was invited here to celebrate self help I have focused less on the challenges and more on what is great in self help. I may have been idealistic at times. But I have found a really good way to respond to that which celebrates the value of idealism and vision. Thomasina Borkman is an American woman and an internationally-respected writer and researcher on self help. One reviewer of Thomasina’s new book said that she presented an “idealistic vision” of self help. Thomasina’s reply was that she wanted to emphasise the best that self help can be. That’s what I wanted to do today.

For more information about Self Help Nottingham, visit the website: www.selfhelp.org.uk