Discussion Articles

SPEAKING UP GROUPS AND SELF-ADVOCACY

The aim of this article is firstly to examine the two concepts ‘self-advocacy’ and ‘speaking up groups’ and attempt to arrive at a satisfactory description of each within the context of social inclusion and community participation. Secondly it will be asserted that self-advocacy must be the benchmark against which all other forms of advocacy should be measured and provides a brief explanation for this assertion.

There are strong reasons why this particular debate should be stimulated. A major reason is that there are strong reason to believe that there is, in many quarters, some confusion of the meaning of the term ‘self-advocacy’ and the nature and variants of role of speaking up groups.

Also, a number of events in New Zealand in the last few years have raised the profile of advocacy – most especially self advocacy – considerably. Arguably the most important of these events are:

In their submission to the Health and Disability Commissioner regarding the 2004 Review The Auckland Womens’ Health Council (AWHC) made the following comments:

The AWHC was most concerned at the results of the satisfaction survey reported on pages 9 and 10 of the HDC’s Annual Report for the year ended 30 June 2003. The results reveal a basic flaw in the empowerment model of advocacy currently in vogue within the advocacy services which argues that by assisting/empowering consumers to be their own advocates in one situation they will not need to engage the assistance of an advocate in future dealings with the health system. The consumer survey revealed “consumers felt they could only move on to some extent” and were not “confident in being able to sort out a similar issue on their own without the assistance of an advocate.” This is not good news for the advocacy service’s model. If consumers are not meeting the needs of the advocacy service by being empowered to be able to do without their assistance when faced with a similar set of circumstances then the Council suggests that the advocacy service needs to develop a model that is more in keeping with where consumers are at and meets the needs of consumers.’
(Submission by AWHC to the Health and Disability Commissioner, 2004)

In his published report, the Commissioner commented that the concerns raised by AWHC reflected concerns raised by a number of other groups (noting especially Maori and Pacific health groups) regarding the ‘empowerment’ model then being practiced by the HDC advocacy service.

This paper will argue that the ‘basic flaw’ identified by these submissions should not be a rejection of the empowerment model per se, but a prompt to more closely examine what the concept of empowerment means in the context of advocacy – and most especially self advocacy.

What is self-advocacy?

There often seems to be a misguided assumption that self-advocacy is essentially an individual process. Though group and/or partner support is acknowledged as part of the empowerment process that leads to self-advocacy, those who prioritise the individual element of self-advocacy see this support activity as something that will diminish as the individual becomes more self-empowered. However, this should be seen as misunderstanding the concept of self-advocacy – most especially self advocacy as applied to people with learning disabilities.

In fact the key to the success of self-advocacy is the ‘speaking up group’:

Self-advocacy key features

Henderson R & Pochin M ‘Advocacy, Justice and empowerment’, The Policy Press, Bristol, 2001

Similarly, the philosophy of People First, probably the worlds most successful self-advocacy movement, emphasises the primacy of the group:

People First is a peer group process which, over time, allows persons to learn to talk for themselves, advocate for themselves, listen to others, make choices, listen to peers, make decisions, solve problems, and ultimately develop leadership skills.

People First is a process which must be paced to insure that every person present has a chance to learn to participate to the best of their ability and learn how to advocate for themselves.

People First must initially be a blending of helpers working with persons in order to provide the modelling and support necessary for the development of self-advocacy and leadership skills.’
(Philosophy Statement - People First Oregon (holders of copyright of trade name ‘People First’))

This emphasis on the major role of ‘peer group support’ in the development of self-advocacy has solid, well proven pedagogic, psychological and sociological foundations. This is well summarised in a New Zealand ‘Social Issues Resource Kit’:

A self-advocacy group enables the people in it to claim their ability, learn by doing, find out who holds power, learn how to exercise power, change images and misconceptions, and build community.’
Social and Ecumenical Action Group, Hamilton, 2004

The key phrase here is, ‘claim their ability’. It is central to the function of a Speaking Up group that the dynamics, environment and dialogue of the group be structured in such a way that the processes are safe, dynamic and empowering. There are three key elements in the dynamics of a speaking up group:

Unlearning

One of the most important functions of a speaking up group is that it is, or should be, a safe place to unlearn:

"it’s not really about learning, it's about unlearning. It is about forgetting all those things that society teaches us. I have spent my life so far trying to be adequate and acceptable, yet have never been satisfied. There is always more to learn, more to know, more to own, more people to meet, more experiences to gain and yes, more love to be found.”
(quoted from ‘Hannah’s story’, L’Arch, Liverpool, 2005)

‘Attitudinal barriers are ideas, fears, and assumptions that impede meaningful communication between people with and without disabilities and prevent people with disabilities from participating fully in society. Most attitudinal barriers are passively learned; unlearning them takes effort and interaction.
(The National Service Inclusion project, UMass, Boston, 2005)

Members of speaking up groups have invariably spent much of their lives in dis-enabling environments. To a large extent their choice making options have been limited and their decision-making faculties atrophied through restrictions imposed on them by their social environment and others perceptions of their abilities. It is essential therefore that both the physical and social environments for speaking up groups are themselves enabling. The physical environment should be one that the group itself has chosen, rather than one imposed on the group. The social environment, similarly, should be one that the individual members of the group feel that they have chosen, that they feel control over and that does not discriminate.

Highly structured (formal) environments, in which the processes are controlled and directed by a few over the other participants are not empowering, except to those providing the direction. It is irrelevant, in this context, whether the few are ‘able’ or ‘dis-abled’ – hierarchies are destructive to empowerment.

The process of unlearning occurs most naturally through the facilitated sharing of stories. Stories can be both negative or positive, they can be your own stories or recounted observations chosen as particularly appropriate to the situation. The important thing is that they are tools in which new attitudes and strategies can be developed in an empathetic and supportive environment. For this reason the ideal facilitator is a person who can directly identify with these developments through his or her own experiences, i.e. a person who has lived through and experienced the dis-enabling processes common to the rest of the group.

However, unlearning is not a one off exercise. Deeply ingrained habits and responses invariably return unless the new responses are frequently re-inforced. This is a key reason why continuation of the speaking up group in self-advocacy is an essential component of the empowerment process.

Problem solving

Essentially advocacy is a problem solving exercise and the ability to identify and solve complex problems is a major component of empowerment and the development of self-respect and personal dignity. Many people with learning disabilities have lived a life in which:

Speaking up groups are (or should be) places where these problem solving processes can be encouraged and developed. It follows, therefore, that it is not an appropriate use of speaking up group to use them as faux CAB’s. places where people with disabilities can explain their problems to an able ‘facilitator’ who will then go away and solve the group’s problems for them.

A further important point to be made regarding problem solving is that both educational and cognitive theory acknowledges that group problem solving is distinctly more effective that individual approaches to problem solving. Research has demonstrated that this phenomenon is even more pronounced with people with learning difficulties.

There is some evidence to suggest that the reason this is the case is that, contrary to popular belief, thinking styles among people with intellectual disabilities are even more diverse than in the general population.

Recognising the diversity of thinking styles in a speaking up group, allowing for the differences in pace of each group member whilst encouraging full participation is one of the more important roles of speaking up group facilitators. Recognising that there invariably a range of solutions to any problem is one of the most important aspects of empowerment. The fact that in speaking up groups a range of experiences, thinking styles and different abilities are brought to the problem solving process encourages the identification of a range of possible solutions that would be difficult for one person tackling the problem alone to identify.

Assertiveness

An important element of the speaking up/self-advocacy process is assertiveness training. This is a complex and crucial function of speaking up groups and usually carried out by specialist trainers who are not only skilled in generic assertiveness training techniques but also in identifying and promoting areas of development and learning specific to the particular disability group.

This may include, but is not limited to:

Role of group facilitator

Generally and superficially, the role of the facilitator in speaking up groups has close correspondence with the role of the facilitator in a focus or brainstorming group:

The Role of the Facilitator

It has long been recognised by self-advocacy groups that the role of the facilitator in the successful development of the speaking up group process is crucial. This is most especially the case when the facilitator is not a person with disability. Indeed there are powerful arguments for suggesting that the facilitator should always be a person with disabilities (though where necessary supported by a partner).

Essentially the speaking up group facilitator is a person who by reason of greater experience can assist the speaking up group to more clearly identify the options, choices and possibilities available to the group and individual members in particular situations. Because speaking up groups are about individual development and empowerment within a group context, one of the key roles of the facilitator is to ensure that the group dynamics remain healthy, non-threatening to individual members and conducive to positive outcomes. It is for these reasons that the group facilitation process is best carried out by a person whose disabling experiences can be recognised by other group members. For example, it has been promoted that carers make ideal facilitators of speaking up groups, because of their own disabling experiences during the caring process. This fails to recognise that though it is in fact true that carers live with disenabling experiences and do share the disabling experiences of those they care for, there are fundamental differences in the way these experiences affect carers as opposed to those they care for. These differences can be of a high order.

But perhaps the main reason that the role of a facilitator in a speaking up group is fundamentally different from facilitators in focus and brainstorming groups is that speaking up groups are, above all, the empowering element of the self-advocacy process. The problems being identified and explored in speaking up groups are real, immediate and personal and the solutions will have immediate and sometimes profound impact on individual group members. The perception that a large element of direction, control and delineation of these processes is being mediated by an able person is extremely difficult to avoid when the facilitation process itself is in the hands of an able person. Even if a facilitator is supported by an able helper, this negative perception is much reduced.

What is the advocacy function of speaking up groups?

Before this question is addressed directly it is first necessary to be quite clear what is meant by a speaking up group in a self-advocacy context. This is important because ownership of speaking up groups has become a key issue in recent years.

A recent paper on self-advocacy groups (McNally S. 2005) explains the issue as follows:

Three types are used in assessing the groups who replied to the survey; autonomous, service-based and divisional/coalition. These are combined for the purpose of analysis here because there is a substantial overlap between these types, and there is a reported lack of people with a learning disability who are involved in coalitions of disabled people (Simons. 1992. pp 6-7).

1. The autonomous’ or ‘ideal’ model. Such groups are independent in terms of time, organisation and finance from professional services or parent bodies. A group could be said to fit the autonomous model if it matched the following three criteria: supporters are independent; meetings take place in independent settings where groups are not attached to services; and the group has financial and organisational autonomy.

2. Divisional groups are formed as a sub-section of an existing organisation for professionals, parents or carers (e.g. Scope. Mencap) and they provide access to the resources of the organisation. However the service users themselves may lose out in any conflict with the more powerful interest groups involved. Coalitions are composed of members with common interest in working for the rights of disabled people. Members with sensory or physical impairments. Mental health problems and learning disabilities from a larger group. Political influence and ability to generate funding are increased in this model but people with learning disabilities may not fare well if more articulate colleagues dominate proceedings.

3. The ‘service system’ model in which the self-advocacy group is based in a service setting, such as a committee at a day centre (adult training centre or social education centre) or a residents’ or users’ group within a residential service operated by an NHS Trust, a social services department or an independent sector organisation. Advantages are: ease of access to group and therefore recruitment of members; and availability of resources as in the coalition model. The disadvantages cited are the potential for conflicts between group and staff, or within a person’s life in the service. Another disadvantage is the perception of the group as simply an activity. A token gesture as opposed to real self advocacy.

McNally S. ‘A survey of self-advocacy groups for people with learning disabilities in an English region,’ Oxford Brookes University, UK, 2005’

Informed readers will easily identify each of these ‘types’ in a New Zealand context. They will also be aware that the ‘substantial overlap’ identified in an English setting similarly exists in a New Zealand setting. In fact these overlaps are probably unavoidable and necessary – so long as the distinctions of each type and their contextual values, disadvantages and limitations are recognised and allowed for.

Most of all the primacy of the autonomous model in the self-advocacy process must be recognised – because it is only through growing within this autonomous dynamic that the individual person will be able to gain the skills, strengths and confidence to operate confidently and as an equal partner within the other models described.

In a very real sense the autonomous speaking up group is the propagating mechanism for self-advocacy. It provides the initial conditions within which the individual can thrive, learn and develop within a protected environment. However, it is more than this, it also acts as a base to which the self-advocate can return from his or her excursions into other advocacy environments in order to sustain or re-affirm the principles of self-advocacy.

This is the proven value of the international People First Movement (and why, incidentally, why People First Oregon – the founders of this movement – hold so tenaciously onto the trade mark ‘People First’.

Speaking up groups work on a number of levels. They have the flexibility to interact with other advocacy scenarios yet at the same time remaining sufficiently distanced to avoid the contaminations of conflict of interest or dependency transfer potentials contained in some of the other models described above.

A schematic example of how a real-life speaking up group operates may explain this:

Chart showing core activities of a speaking-up group

(schematic model of People First Speaking Up Group in action based on core activities of one London-based People First group. A number of activities have been omitted to aid clarity)

It can be noted from the above that in some cases individual members of the core group are employed (paid/unpaid) within service provider and other organisations. In these cases, the protocol is to describe their role as ‘advocate’ (i.e. advocating with and on behalf of others) rather than as self-advocates. This is to maintain the distinction between autonomous and non-autonomous advocacy activities. In all cases, however, the importance of maintaining links with the core speaking up group is seen as an essential element of personal and group development.

The role of self-advocacy and speaking up groups in the broader advocacy movement
One of the reasons for writing this article was to address the concerns raised by various groups in submissions to the Health and Disability Commissioner. It was felt that some, at least, of these concerns may have arisen from a misunderstanding of the concept of self-advocacy and its role within a suite of differing advocacy practices.

This section is based on an assumption. Fortunately it is an assumption that few, if any, of those involved in the advocacy movement would disagree with – that is that the primary role of all advocacy is to promote the empowerment of dis-enabled groups and individuals. The logic for this assumption arises from the following statement:

The need for advocacy arises when circumstances have taken away an individual’s freely for their interests. The advocacy movement has at its foundations the recognition that there are groups of people for whom such disempowerment is not so much a random occurrence as a way of life.’
Henderson R. & Pochin M. op cit

In addressing this issue it is necessary briefly to delineate health and social care advocacy from advice work on the one hand and legal advocacy on the other - two activities with which health and social care advocacy sometimes becomes confused.

Brandon (1995), argues that:

The movement from domination by care professionals to domination by lawyers can consist in simply swapping one form of Tyranny for another.
Brandon D. with Brandon, A. & T. ‘Advocacy: Power to people with disabilities, Birmingham Venture Press. 1995

This stark statement articulates expressively a key dilemma in all models of advocacy. That is, how do you support a person in such a way as to ensure that that person, the advocacy partner, is not merely substituting one form of dependency for another? It is for this reason that the word ‘empowerment’ and term ‘empowerment model’ are such powerful currency in the advocacy debate.

Though nobody would use the word ‘Tyranny’ to describe advice work, advice work can be seen as the other side of the legal advocacy coin. Typically advice work is either active or passive. In the latter, the advice worker merely gives information and advice in appropriate forms and the recipient takes this information away and acts on it. In active advice work, the advice workers themselves act on behalf of the individual (make phone calls, write letters, pursue the cause, taking the lead in all processes). The individual becomes a passive passenger on the journey of discovery and litigation. In all these cases, it is at least likely that the individual caught in these processes will become more disempowered, feel less ‘able’.

For these reasons the advocacy movement, in various forms, accepts that the advocacy process must be an active and participatory process – a genuine partnership. At the heart of all advocacy activities is the implicit (at least) goal that the primary outcome of the process that the partner will be enabled, through this process to overcome the barriers of exclusion that has disbarred this person from normal social intercourse and participation.

It is also true that within the advocacy movement itself there is a continuum of expectations. Clearly there are going to be situations when (as in citizen advocacy and non-directed advocacy) a person’s disabilities are so profound that social inclusion and participation can never be achieved without committed and on-going advocacy support. At the other end of the continuum (as in crisis intervention advocacy) the expectation may be that empowerment process may be a wholly achievable and comparatively short term process. It may involve little more than standing beside the partner as the crisis unfolds and is resolved whilst at the same time providing information and direction that will enable the person to locate within an established support network:

The best advocates are the ones who work themselves out of a job. As early as possible.

Ideally this will be because the strength and confidence the partners have gained out of working with their advocates has made them strong enough to advocate for themselves in future.

With a little support!

Because good self advocacy is a support thing!’
Tufail J. & Lyon K., ‘The Books of Speaking Up’, Jessica Kingsley , London, 2005

In a very real way therefore, self-advocacy is the Holy Grail of the advocacy movement. For many advocacy partnerships it is not something achievable in reality – but the grail must remain shining as a spiritual if not actually achievable goal. And if self-advocacy is the Grail, then empowerment is the sword Excalibur – the mighty tool that will enable the obstacles on the quest to be overcome.

This gives self-advocacy a special place on the advocacy continuum – in fact in a sense it is not so much a part of the continuum as the yardstick by which the different elements of the continuum define themselves.

It is the major premise of this article that without a strong, autonomous, well defined and well supported self-advocacy movement there cannot, by definition, exist a strong advocacy movement.

Conclusion

Given the major premise described immediately above, the conclusion will depend on the minor premise/s of which there are (for simplicity’s sake) two available:

MINOR PREMISE 1: There does exist a strong, autonomous, well defined and well supported self-advocacy movement in New Zealand

MINOR PREMISE 2: There does not exist a strong, autonomous, well defined and well supported self-advocacy movement in New Zealand

Taking the definition of ‘autonomous’ given by McNally (itself a generally accepted definition) that to qualify as autonomous (truly independent) organisations must meet three criteria:

It is hard to support MINOR PREMISE 1.

There are few self-advocacy organisations in New Zealand that meet these criteria.

Self advocacy groups in New Zealand are not well funded in general – a situation that is compounded by the fact that a large proportion of funding comes from organisations that are essentially service providers. This, of course is not the fault of either the funding bodies or the recipient organisations, it seems more to do with the way funding is structured in New Zealand. Indeed, although there has been much debate around the need for advocacy – and a general acceptance that advocacy organisations require autonomy – there has been little though given to how this should be achieved, what instruments and safeguards need to be in place to ensure sufficiency, reliability and independence of funding. Government policy papers that support the development of advocacy have little to say on how advocacy should be funded – now do they offer support or guidelines to service provider organisations that wish to support independent self-advocacy.

There are a number of ways in which financial support can be offered to commissioners of advocacy services by government, local councils or provider organisations that will not compromise the autonomy of advocacy organisations. A glance at the UK gives two excellent models.

When the UK government published the ‘Valuing People’ white paper on the future for learning disability support it explicitly recognised the need for funding of advocacy organisations. It also recognised the fact that monies provided by central government could not be given directly to advocacy organisations without threatening their independence. It therefore allocated a budget of six million pounds for advocacy development and responsibility for allocating these monies was given to the British Institute of Learning Disabilities, itself an autonomous organisation.

Mencap (UK equivalent of IHC) also recognised the need for advocacy organisations to have financial autonomy. Mencap’s solution was to enter into partnership with local authorities to joint fund advocacy organisations – thus reducing the risk of such organisations becoming financially dependent on a single provider organisation. Other provider organisations merely fund independent charities wishing to provide financial or other support to advocacy services.

New Zealand’s situation is, of course, different. There is not, for example, the access to the very great amount of money available from charitable sources that exists in the UK (e.g. Kings Fund, Rowntree Foundation, Richmond Fellowship and many more). Local authorities in New Zealand do not have the financial resources available to their UK equivalents. However advocacy funding needs in New Zealand – especially with regard to self-advocacy and citizen advocacy are probably even greater than those in the UK and there is little doubt that this is widely recognised.

What is required now, is a debate on the best and most appropriate way in which such funding can be made easily available and the most appropriate methods of administering such funding.

Empowerment is not an easy option – nor in the short term is it necessarily a cheap option. Those organisations who raised this issue with the Health ad Disability commissioner are to be applauded for identifying a current flaw in the empowerment model of advocacy promoted by HDC. However, it may be that their observations and concerns might well have been better direct directly to government. HDC is right in promoting empowerment – but they cannot be required to fund the development of empowerment models of advocacy – most especially self-advocacy.

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