POSSIBLE CONFERENCE ON RECOVERY

RECOVERY – A DOUBLE-EDGED SWORD?

　
Recovery – the word, the concept and the discourse

In 2002 I co-wrote (with Turner-Crowson) a paper on the British perspective of recovery. In it we stated that the basic concept of recovery was simple logic –

- that if people can break down or become ill, then they can also overcome their problems and recover.

It seemed then, and it seems now, that it ought to be uncontroversial that recovery is possible and desirable, and should be the main purpose of mental health services.

Yet it seemed that psychiatric services often emphasise maintenance rather than recovery, and that receiving a psychiatric label made it harder for people to go on to lead a worthwhile and enjoyable life and contribute to others.

Anything that could challenge these negative assumptions had to be a good idea, it seemed, and the relatively recent concept recovery offered a new and positive perspective for everyone.

However, words can be powerful, as they are the way we shape and understand our lives, and once they are formed into concepts or discourses they become even more powerful. Foucault’s Archaeology (1972) encouraged us to research the history of our concepts to see who invented them and why, since if we fail to continually deconstruct and renew our discourse we may not realise the power the original ideas have taken on to limit and control our thoughts and actions.

Related discourses - Social exclusion and social inclusion

In trying to unearth the discourse of recovery, I am also led to looking at the related concepts of social exclusion and social inclusion. While ‘recovery’ has had a mostly positive press, these other concepts have attracted critique from a social science perspective.

‘Social exclusion’ has been critiqued by Arthurson and Jacobs (2003). They argue that it is a very broad poorly defined concept, whose main value is in bringing into focus the social and interpersonal relations in poverty and deprivation. Like ‘recovery, ‘social exclusion’ is multi-dimensional and can be hard to pin down. In terms of political philosophy it can be seen as belonging to the anti-monopoly left (Marx and Weber), rightwing economic liberalism, or to Durkheim’s social solidarity model. Along with that go different moral underpinnings:

A ‘redistributionist discourse’ – poverty as the cause of inequality

A ‘moral underclass discourse’ – individual morality of the poor leading to their exclusion

A ‘social integrationist discourse’ – employment as the means to combat exclusion.

Spandler (2007) critiques the way in which a policy focus on tackling ‘social exclusion’ has uncritically slipped into a focus on ‘social inclusion’, finding the two terms used as unproblematic opposites. Social inclusion, she says, is hard to critique, as there is an assumption that, like ‘"choice", "user involvement" and "recovery" ...it is self evidently desirable and unquestionable’.

‘inclusion tends to imply a benign effort on behalf of these exclusionary agents (individuals, groups, institutions or markets) to ‘include’. The policy shift to ‘inclusion’ can make invisible the social structures and divisions which generate and sustain exclusion and create an obsession with the choices and responsibilities of the individual rather than the constraining context in which they live’ (Spandler 2007)

Spandler concludes that a key feature of modern governance is to seek to legitimise the status quo through inclusion and consensus, rather than conflict and coercion.

In this way, inclusion, involvement and participation become important ways of ensuring that the marginalised and excluded feel they have a stake in the modern social order...
yet inclusive governance conventionalises and prioritises certain principles, values and behaviours such as competitiveness, efficiency, flexibility, employability and consumption....
to enable these values to take root, Governments have increasingly formulated policies, established new programmes and promoted initiatives to regulate the conduct of citizens not only by social control, but also through acting upon their choices and aspirations...
.to ensure we all sign up to a range of uncontested objectives which by default, foreclose more radical alternatives to tackling social inequalities

These arguments can, and should, also be considered when we look at the role of ‘recovery’ as a policy initiative.

Definition

Bill Anthony, of Boston University who made one of the first descriptive definitions;

His definition specifically includes iatrogenic injury among the problems people may have to recover from:

Recovery is a deeply personal, unique process of changing one's attitudes, values, feelings, goals, skills and/or roles. It is a way of living a satisfying, hopeful, and contributing life even with limitations caused by illness

He also notes that

People with mental illness may have to recover from the stigma they have incorporated into their very being; from the iatrogenic effects of treatment settings; from lack of recent opportunities for self-determination; from the negative side effects of unemployment; and from crushed dreams...Recovery is what people with disabilities do. Treatment, case management, and rehabilitation are what helpers do to facilitate recovery.

Recovery has been further defined as the process of regaining active control over one’s life. This may involve discovering (or rediscovering) a positive sense of self, accepting and coping with the reality of any ongoing distress or disability (Faulkner and Layzell, 2000) finding meaning in one’s experiences, resolving personal, social or relationship issues that may contribute to one’s mental health difficulties, taking on satisfying and meaningful social roles, and calling on formal and/or informal systems of support as needed (Leibrich, 1999).

Services can be an important aspect of recovery but the extent of the need for services will vary from one person to another.

For some people, recovery may mean exiting from mental health services either permanently or for much of the time.

For others it may mean continuing to receive ongoing forms of medical, personal or social support that enable people to get on with their lives. (CSIP/RCP/SCIE 2007)

The history of the concept –longitudinal research and survivor writings

An understanding that most people do recover from serious mental illness is based on longitudinal research (Harding et al 1987, Warner 1994).

But the ‘recovery vision’ emerged in the writings of survivors.

Though some survivors and others are now arguing it came from professionals and was imposed as a top-down concept, the evidence is that survivors in the US were the first to use this concept as a potential new vision for mental health services.

It emerged from the writings of US survivors about their personal struggles– in particular, Pat Deegan, Judi Chamberlin, Rae Unzicker and others in the USA in the 1980s, being taken up by researchers at Boston University and others. It emerged in UK in the1990s, in the writings of survivors such as Ron Coleman, 1999; Alison Reeves, 1999 and others.

Many began to write about coping with symptoms, getting better, and regaining a satisfactory sense of personal identity that was not defined by illness experience. This was then taken up by leading researchers such as

However in the UK at the time recovery emerged here, other concepts were already emerging from the survivor movement – self management, coping strategies, strategies for living. Many of those who developed these concepts did not see the need for the concept of ‘recovery’, which was regarded as an unnecessary American import. This controversy among survivors about ‘recovery continues to this day and grows stronger the more successful ‘recovery’ has been in influencing government and professional bodies.

Success of the recovery concept

Since that time Recovery has had remarkable success around the globe:

In the USA it has been endorsed by the US Surgeon General as well as many of the leading Universities – incl Yale and Boston, and by NAMI the leading Families organisation.

In the UK NIMHE led the way, but it is now seen as part of Government mental health policy and endorsed by the RCP, mental health professional bodies and all the national vol sector mental health orgs.

Most mental health organisations have defined recovery and adopted it is part of their vision and aims. Recovery measures have been developed and are being tested and used in the US and in parts of the UK. Scotland has been particularly successful in developing recovery and in involving service users in the work.

Other countries including New Zealand have taken it up enthusiastically, service users in New Zealand have led the way in developing competencies for mental health professionals in recovery and integrating Maori perspectives into the concept.

Yet, despite, or maybe because of the rapid success of recovery, I am now seriously considering distancing myself from it, and often feel embarrassed at being so much identified with the concept among my friends in the British survivor movement.

My paper of 2002 (with Turner-Crowson) did identify some problems that were being put forward by service users at that time in England:

Issues raised in Britain in the 90s about recovery

A Mental Health Foundation discussion with survivors on Recovery towards the end of the 1990s raised the following questions:

Recovery from what? Does speaking of 'recovery' imply acceptance of a medical approach to mental illness; i.e., if you don't see yourself as 'ill' in the first place, how can you recover?

Recovery to what? The 'recovery movement' feels to some people rather like a 'born-again' revival, that they don't want to join. Will those who do not recover be regarded as failures by other ‘recovered’ survivors? Will those who ‘recover’ have support and benefits prematurely withdrawn?

Whose recovery is it anyway? Will 'recovery' be adopted as fashionable jargon by mental health professionals and used to judge service users in a way similar to the current use of 'compliance'? Also, could a focus on recovery contribute to neglect of those considered less able or willing to recover?

Why import recovery language? Some think it would be better to continue building on indigenous concepts such as 'strategies for living' and others, rather than encourage re-thinking through use of the recovery vision.

The colonisation of recovery

These questions did not go away, and there is now evidence that the concerns raised by service users then have deepened to the point that many now see recovery as fatally compromised.

Some are developing a ‘resistance movement’ against it. There is an Anti-Recovery group on Facebook, and there has been a recent debate on the Survivor History network about it. Critics include leading survivors who have done much of the work to raise the profile of service users in the UK, as well as ordinary less well known people still trying to survive their daily lives and get good services for themselves.

Leading survivors themselves are often still in this daily survival mode too, being a well known ‘face’ doesn’t mean that people no longer use and need services.

Many see ‘recovery’ as fatally compromised and past redemption.

Why is this? What has gone wrong? Is it just England, or is this problem endemic in the concept?

I think we have a particularly acute problem with ‘Recovery’ here, and can learn from how other countries, even as near as Scotland, have been better able to integrate Recovery, so I will focus on what is going wrong here, though being aware that to a greater or lesser extent these issues are arising everywhere.

Mary O’Hagan (2009) has recently written about ‘the colonisation of recovery’

She says that ‘disillusioned user/survivor recovery leaders’ are now discussing replacing recovery with ‘wellbeing promotion for people with a diagnosis’ , not because they think it is necessarily a more advanced concept, but because

‘we believe recovery has been diluted and colonised to fit a system that continues to be deficits based, over clinical, over controlling, and ghettoised.

A survivor critic in the UK talked about how recovery has been assimilated into ‘relapse prevention’ -

I recently heard colleagues talking about 'recovery - how not to relapse'....this would seem somewhat contradictory and highly revealing about where things are really at in frontline mental health services around recovery. In the UK recovery does seem to be the latest buzz word, serving a range of political and financial expediencies for some people.

One way to see what is happening is to note that in order to create a consensus in England between professionals, service commissioners, families and patients (this may well apply in other countries too), a diluted version of recovery has been created, which is limited to the ways in which mental health services can be improved and updated, but does not seriously challenge medical diagnostic and treatment concepts.

FACEBOOK QUOTES

the recovery agenda in mental health is all persuasive and people are taking their eyes off the medical model as they forget it is still very much there as the core supporting structure underlying the recovery agenda.

I have not yet come across any work that has been produced recently (by anyone) around recovery that is able to truly and honestly disentangle itself from the medical model. [anti recovery page, Facebook]

Evidence from survivors of the colonisation of recovery

So, what is the evidence for the colonisation of ‘Recovery’ in the UK? Evidence so far is mainly anecdotal, but the anecdotes and personal stories are mounting up:

Recovery from what?

My paper asked, and this is repeated in recent survivor writings.

the psy system, it’s a system, the product of an unequal and inequitable social structure…how could it possibly ‘care’? , … anybody seeking compassion is looking in the wrong place…systems don’t ‘feel’ anything, they are there to deliver, to achieve outcomes…sometimes better or realistic than other times…..its role is to ‘control’, ‘enforce’, ‘deflect’….. The thing to do now though for me, is actually to recover from using those services.

No one talks about the damaging impact and fall out of psychiatric or medical assault . Or the institutional discrimination which exists (within the mental health sector), this can be witnessed within the design, delivery and implementation of many policies and procedures which operate to make it impossible for service users and survivors to obtain employment (if employment is a recovery outcome...which it so often is these days....)

From an American survivor:

the Mental Health and medical system in the U.S. killed my kidneys, I was lucky enough to get a transplant but now the drugs for the transplant have almost killed my ability to make white blood cells so I am under doctor's orders to isolate myself which makes "recovery" ( as in employment, "relates well to others", is married--and straight of course or if not in a long term gay or lesbian relationship--and have kids--oops, kidney failure made that impossible) - and a job,.......well in the U.S. we have no universal health care so if I take a job I lose my Medicare that pays for the transplant drugs and then I end up back on dialysis....

Recovering from mental health and medical services is something the nice recovery rhetoric omits, sometimes I think surviving that is far harder than whatever led to us to the system in the first place.

Recovery to what

, - my paper asked if there is a danger that an over-emphasis on recovery could be an additional burden for people who do not feel they are in ‘recovery’, whereas language such as surviving, coping, or developing strategies for living is more neutral and accepting?

This critique is now reinforced by arguments that attempting to measure ‘Recovery’ has made it too focussed on Outcomes at the expense of the PROCESS. Attempts to measure recovery are obviously fraught with problems, and the Recovery Star has been singled out for trying to standardise goals and outcomes unrealistically.

[the Recovery Star] is focussed on outcome rather than process, with predetermined descriptors and the use of the word 'measure'.

. What does each number on the star represent, in a meaningful way? ..

Yes, we all need to see we are making progress, but this tools sets up ‘recovery’ as some sort of linear pathway.

If it’s only ever about outcome then goals quickly turn to expectations which can lead to failure, if they are unrealistic or cause undue pressure or are just plain meaningless.　　　　

Recovery in UK policy is seen as far too focussed on one outcome – employment – which as the previous quote said, is at the same time made more difficult by government policies:

Removing myself from the Psy radar took years and standing by my decisions is sometimes even harder and an ongoing struggle……there’s all sorts of fallout now, outside of the consulting room with no ‘professionals’ to help out, or sign letters/forms, back up something or other, I’m worse off in so many ways , you do not want to know how many times the DWP and Inland.Revenue have hauled me in …

Then..., we are left with all the discriminatory fall-out so that returning to paid employment means negotiating an unforgiving Occupational Health which can just as easily send you back to the hospital you've walked away from for assessment.

Occupational Health has been defined as one of the worst hazards for people with diagnoses attempting to return to employment:

Occupational Health, there is no law in the land that says employers must go through these assessments...it’s just what is done , has always been done...there are so many other more creative and useful ways of working out how to best support people in their work than bloody Occupational Health..

Occupational health has many miles to go in terms of social models. Let us look at DDA for a moment....I do not know why any organisation – large or small becomes so involved in needing to have an occupational health assessment.　 Rather than relying on this assessment they should be thinking about a more creative application of DDA. I have lost count of how many times I have sat with my line managers and HR departments and said the following statements

‘I will happily have a conversation with you about how you support me to be a more effective worker’.

‘I have no issues with discussing my support needs with you’

‘I am encouraged that you want to know how better to support me to do the job’

‘I am keen to look at a range of options so that you can make the necessary reasonable adjustments’

‘Rather than replying on a medical report, written by a doctor who does not know me and who knows very little about the job you have employed me to do, would it not be better for us be talking directly rather than me talking to a separate doctor who then sends you a report’.

This seems to fall on deaf ears, because some mental health charities still buy into occupational health assessments as much as any private company or the NHS.

My most recent experience of Occupational health led me to be completely outraged by the process that the mental health charity and Primary Care Trust had instituted to carry out the assessment. The content of that assessment was also staggering.

I only ever had one telephone conversation with a nurse from Occupational Health....The nurse was very concerned that as I am someone with a psychiatric history, "it may be inappropriate for me to have access to other service users" I was told.

She told me this would require further discussion with the doctor before a decision could be made either way.

This line of questioning in itself made me feel very unsafe, particularly because it was done via a telephone conversation... I had been in post for six months – (my employer had decided to start me without Occupational Health Clearance),

I was still within my probationary period. ... My employer needed a satisfactory medical report from Occupational Health in order to confirm me into post. Other areas of my probationary meeting became superseded by my ‘fitness’ to do the job (even though I had been in post six months).　 I did not pass my probationary meeting because Occupational Health had not yet provided a ‘satisfactory medical report’.

　
Whose recovery is it anyway?

Work has never been about 'recovery' ..., it’s a means to an end , a way of paying the rent when not on benefits...there’s nothing therapeutic or empowering about that ...it’s just the way it is - you got to eat somehow... I’ve never seen it as part of a journey / recovery pathway...I would also add, that some jobs I’ve done within MH settings are those where I have received the least support, and more discriminatory attitudes and practice..

A related concern is the fear that the recovery paradigm could be used as a rationale for withdrawing needed benefits or services.

A survivor friend of mine says:

My recovery concerns centre on mental health services ‘de-enhancing’ many from enhanced CPA and more limited application of CPA and how this is seen as doing us a favour! For us to do a self directed care approach alongside looking for jobs. Also many charities can’t fight our corner now as they face cuts. Who will stand up for us? Most of us support recovery as long as its application supports us on our journey rather than looking at when to pull workers out. Do GPs understand recovery or will they just class us as ‘one of the worried well now’?

As I said in my 2002 paper - there are good reasons for people to fear that they will be discriminated against in the job market and that they may lose more than they gain by abandoning the ‘sick’ role. ... Equally important is the question of whether a focus on a recovery paradigm is working only for the more rewarding or compliant clients, to the detriment of those in greatest need.

Do we need recovery language at all?

　

One real stumbling block for me is that, despite receiving mental health services regularly for many years, I have never thought of my life in terms of recovering from a catastrophic event or events. Recovering, attempting to recover, being in recovery, being recovered, ring no bells for me at all. I suspect there are other service users around who feel the same. Viewing parts or all of your past and future life in terms of "recovery" may be helpful but it is by no means the only useful framework for looking at your experience and prospects.

In my opinion, the last thing we need to be doing at the moment is replacing an old orthodoxy with a new orthodoxy, even if the new one is more influenced by the lives and contributions of service users.

Recovery is seen by many survivors as an evangelical movement trying to swallow up everything that sounds good:

Have you noticed how "recovery" has appropriated many concepts including social inclusion under its umbrella? It's scooped up everything and anything which looks good and rebranded it and relaunched it as new improved super-duper recovery. It's as though people need some new religion to follow.

The critics mock the idea of there being something, e.g Thriving, that is beyond even recovery!

I've gone into a 'beyond Recovery' state of mind. I used to have a phobia about telephones, couldn't answer them at all. Since my WRAP, DBT, MFI and ADHD training, I now answer the phone whether it's ringing or not......

I have recovered from the coercive 'mental health'/illness system but it is difficult to recover from life problems because they are part of the human condition--- everyone has these, no one escapes. Most ' mental health' providers consider themselves to be this rare breed who exist without problems. Who is delusional?!!

I remember a training session with trainee psychologists and one of them claimed to have "unbreakable internal resources". People who don't know their own vulnerabilities are scary!

　
Recovery and minority ethnic groups

Recovery is criticised as being a white movement which does not work for minority ethnic groups: Suman Fernando says:

The 'recovery approach' is far too centred on the individual and tends to ignore the political and social context of 'mental illness'. As such its relevance may be limited to a small group of service users - white middle-class mainly. It's use widely is likely to add to social exclusion.

The journey for many black people in a racist society to escape from the aftermath of a major life disruption requires a holistic approach, where community is more important than 'self' and one that is inseparable from dealing with racism and discrimination in many aspects of their lives.

In my view, recovery is far too mild a word to encompass such a journey towards a respectable and fulfilling life.

The journey (which many black people caught up in the system never complete) is better represented by 'liberation' or 'struggle' (see my article in Openmind magazine, published by Mind, January/February 2008.)

One of my own concerns – how can Recovery be compatible with the new Mental Health Act? is reflected in this quote from a survivor:

So much of recovery is very much embedded within a medical understanding of distress, which dictates and limits the way professionals work with people in distress and the treatment they will receive.

I cannot ignore, that come Oct 2008 two pieces of bloody awful draconian legislation will come completely into force in the UK- the Mental health Act 2007 and the new DWP ESA rules for people on Income Support and Incapacity Benefit - absolutely terrifying laws which fly in the face of our ... attempts at supporting people through a recovery based approach.

How can we talk about recovery in light of these huge legislative changes that will have all sorts of consequences on the lives of people who fall within their remit?

Can recovery discourse be saved?

O’Hagan says that in user/survivor and New Zealand literature,

‘recovery is a social process and responsibility, as well as a service and individual one.

Our version rejects many of the defining features of most contemporary mental health services – their fixation on deficits and on clinical services, and their tendency to control and ghettoise people.

She lists the following from an unpublished paper agreed on by an international group of user/survivor experts.

Recovery-based services support people to live the life they choose through:

Respecting and promoting their self determination

Fostering their leadership in services as individuals and collectives

Preventing coercive practices

Expecting recovery rather than lifelong disability

De-pathologising mental health struggles and viewing them as extremely challenging but essentially human [and meaningful] experiences.

Recognising the psychological, social, spiritual, existential and biological determinants and consequences of mental health struggles

Providing people with access to a broad range of services, community resources and opportunities that affirm their personal power and their value in the world

Providing equal opportunities to education, employment, independent housing and citizen participation

Developing a positive, diverse workforce, where the wisdom gained from mental health struggles is highly valued.

(O’Hagan 2009)

I continue to think that Recovery is a natural word which has obvious and useful meanings in mental health, but as a specific policy in mental health the concept is becoming seriously damaged and compromised from the perspectives of service users.

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