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Recovery and the right to contribute
Love and work are the cornerstones of our humanness
(Sigmund Freud, 1961).
If love and work are central to our humanity they are also central to recovery. Everyone who experiences mental health problems faces the challenge of recovery: growing beyond what has happened and recovering a new sense of self, meaning and purpose in life; retaining or recovering a meaningful, valued and satisfying life (Anthony, 1993; Repper and Perkins, 2003). A sense of belonging – love, having people around you who care about you and who you care about – are central to rebuilding a new sense of self and meaning. Having a purpose in life: being able to contribute to others and to your community is equally important.
Many people who have experienced mental health challenges have talked movingly about the loss of belonging, meaning and purpose in life associated with worklessness:
Out of the blue your job is gone, and with it any financial security you may have had. At a stroke, you have no purpose in life, and no contact with other people. You find yourself totally isolated from the rest of the world. No one telephones you. Much less writes. No-one seems to care if you are alive or dead
[…] I was 19 and had the same ambitions as any other 19 year old. I had hoped to make a place in the world for myself. But instead I was a patient in a hospital […] the vocational rehabilitation counsellor […] said “Well there’s nothing much I have to offer you; I can see from your records that you’ll never be capable of holding a job.” Tears came to my eyes; I thought all the facts were in. At the age of 19, when most people are eagerly anticipating and planning for the future, I had been told that I had nothing to look forward to but a “career” as a ward of the state
The importance of work in mental health has long been recognised (see Bennett, 1970; Rowland and Perkins, 1988; Perkins, 2012). As far back as 192AD the Greek physician and philosopher Galen described work as “nature’s best physician” and “essential for human happiness” (see Rowland and Perkins, 1988). The value of work is one of the few things that clinicians coming from very different theoretical perspectives can agree upon. Sigmund Freud (1961) argued that people need two things – love and work – and that it is work that “binds the individual to reality”. Thomas Szasz (1974) described work as “the closest thing to a panacea known to medical science”.
The use of work to alleviate psychological distress is usually dated back to the work of eighteenth century pioneers like Halloram in Cork, Esquirol and Pinel in Bicetre, Paris and Tuke and Murray at the Retreat in York (see Rowlands and Perkins, 1988). More recently, Professor Bob Drake has observed:
In following people for 30 years and then following patients who are in dozens and dozens of research studies that are sent around, it’s totally clear to me at this point that there’s nothing about medications or psychotherapies or rehabilitation programs or case management programs or any of the other things that we study that helps people to recover in the same way that supported employment does
The right to work is enshrined in:
Article 23 of the United Nations Universal Declaration of Human Rights (1948): “Everyone has the right to work, to free choice of employment, to just and favourable conditions of work and to protection against unemployment”.
Article 6 and 7 of the United Nations (1996) “International covenant of economic, social and cultural rights”: “States parties to the present covenant recognise the right to work, which includes the right of everyone to the opportunity to gain his living by work which he freely chooses or accepts, and will take appropriate steps to safeguard this right”.
Article 27 of the United Nations Convention on the Rights of Persons with Disabilities (2007) which recognises “the right of persons with disabilities to work, on an equal basis with others; this includes the right to the opportunity to gain a living by work freely chosen or accepted in a labour market and work environment that is open, inclusive and accessible to persons with disabilities”.
Yet it remains a right that is denied many people diagnosed with mental health problems. Studies repeatedly show that the majority of people facing mental health challenges would like to work – and indeed have the highest “want to work” rate of all disabled people (Social Exclusion Unit, 2004). Yet few have the opportunity to do so. People with mental health challenges consistently have the lowest employment rate of all disabled people. With a general employment rate of 71.6 per cent, and an employment rate for disabled people of 46.9 per cent, the employment rate for people with mental health problems in 2013 was 14.2 per cent (Department for Work and Pensions, 2013) and the rate for people with more serious mental health conditions was 7.9 per cent and falling (Department of Health, 2013a, b).
With rising unemployment under the Thatcher years, people who were out of work were often actively encouraged to move onto incapacity benefits in an attempt make the alarmingly high unemployment figures look less bad. It was therefore easy to talk, and campaign around the right to work. Now times have changed and attempts are being made to reverse this process – stem the “rising tide” of people claiming incapacity benefits. In 2016 we live in an era where governments are desperate to reduce the budget deficit and see reducing the benefit bill as a major way of doing this: by reassessing the “work capability” of those who have been claiming incapacity benefits and, for many, making the receipt of benefits contingent on actively seeking work. We would argue that attempts to force people to work under threat of withdrawal of welfare benefits is both wrong and counterproductive. There is no convincing evidence that threats of benefit withdrawal increase employment rates among disabled people – including those diagnosed with mental health problems (Pickles et al., 2016). It is more likely that the threat of withdrawal of benefits, and the increased poverty when benefits are suspended, is likely to exacerbate a person’s problems and thereby decrease their likelihood of gaining work.
However, this does not mean that the majority of people living with mental health challenges should be denied their right to work. The choice not to work is only a choice if a person really has the chance to work if they so wish (as the majority of people facing mental health challenges do). There is a big difference between someone choosing to fast when they can access food and enforced starvation through lack of food. In order to ensure that people have a real choice, the barriers to work need to be broken down.
Typically the barriers to work faced by people living with mental health challenges are not the “symptoms” per se. Surely there is no-one who is completely unable ever to do anything that is of use to others? If people are able to do something that is of use to others then they are also able to work in the right job (including self-employment), with the right conditions, hours and support. More often the barriers revolve around:
Fear, for example, that work will make problems worse, that you will not be able to cope, that you will encounter prejudice and discrimination in the work place, that you will be worse off financially – or that if you even try your benefits might be reduced.
Low expectations on the part not only of employers but also of mental health workers:
I’d love to go back to work […] earning your own money, being your own person […] but they won’t let me back. The GP and the doctors at the hospital say “no”
When I said I wanted to work I was told this was an unrealistic goal. That I was too sick and the stress would be too much. I […] gave up any idea of work […] I lived with no hope of a future
I have had two medical assessments – one lasted 2 minutes the other lasted 5minutes. [Each time] the doctor opened my file, saw I was on lithium, closed the file and ended the assessment. He assumed I couldn’t work because I am bipolar (Perkins et al., 2009).
Recovery involves daring to dream and pursue your aspirations. If mental health workers are to support people in this journey it is critical that we believe in people’s possibilities and actively assist them to pursue their aspirations rather than dashing hopes in this way:
Failure to provide the support that people need in order to gain employment and progress in their careers. The right to accessible workplaces and to the support and adjustments necessary to work are part and parcel of the right to work (United Nations Convention on the Rights of Persons with Disabilities, 2007, Articles 19 and 27). There is a wealth of evidence that, with the right kind of help and ongoing support most people with even the most serious mental health conditions can gain and prosper in employment (see Bond et al., 2008; Sainsbury Centre for Mental Health, 2009; Perkins et al., 2009).
Yet very few people have access to the evidence-based support that is their right. It is the duty of mental health workers and services to ensure that this right is realised. In this context, it is noteworthy that the “Five year forward view for mental health” (Mental Health Task Force, 2016), and its associated implementation plan (NHS England, 2016) recommend the doubling of access to evidence-based supported employment (individual placement with support) to enable people facing serious mental health challenges to gain and sustain employment.
It has become fashionable to talk about the stress of work, and working in an inappropriate job in an unsuitable environment can be harmful (Warr, 1987). However, repeated research demonstrates that the stress of unemployment is far more deleterious to health and well-being (see e.g. Bennett, 1970; Rowland and Perkins, 1988; Royal College of Psychiatrists, 2002; Waddell and Burton, 2006; Perkins et al., 2009). Appropriate employment:
reduces the risk of developing mental health problems and reduces symptoms, decreases the likelihood of relapse and decreases use of mental health services;
reduces the risk of suicide;
links us to the communities in which we live and enables us to contribute to those communities;
provides meaning and purpose in life;
affords status and identity;
provides social contacts;
gives us the resources we need to do the other things we value in life; and
is good for physical health: decreases the risk of many physical health problems and premature death.
Too often, those of us facing mental health challenges end up on the receiving end of help and support from everyone else – even our parents, partners and children are mysteriously transformed into “carers” with all the loss of reciprocity that this implies (Perkins, 2001). Always being on the receiving end of help and hand-outs from others is a dispiriting and devaluing place to be. Everyone needs help from time to time, but reciprocity is important: we gain our sense of value and self-worth not by receiving help but by giving it. There are many ways in which we can contribute to our communities via, for example, raising children, supporting our relatives and friends, engaging in politics, community action. Yet employment is an important, probably the most important, socially valued and validated way in which we contribute to our communities.
Whether we like it or not, our jobs in large part define our status and identity in society. Any class of person that is routinely excluded from the labour market is therefore devalued, marginalised and excluded from the warp and weft of our communities. In their struggles against prejudice and discrimination, women have fought for the right to equal work opportunities, so have people from black and minority ethnic communities, people of different faiths, lesbian, gay and bisexual people. For people who are marginalised and excluded from our communities as a consequence of their mental health problems, unemployment compounds such marginalisation. The isolation, poverty, loss of identity and purpose that accompany unemployment increase exclusion and exacerbate mental health challenges. Unemployment can so easily lead to loss of all identities other than that of “mental patient” and reinforces the notion that we have little (if anything) to contribute.
Too often, when we think about work for people facing mental health challenges, we think about unpaid opportunities like volunteering or work preparation in sheltered settings. A wealth of evidence exists to demonstrate that such sheltered opportunities and pre-employment training are not a good way to help people to gain open, paid employment (see Sainsbury Centre for Mental Health, 2009 for a summary). There is nothing wrong with volunteering and unpaid work: many of us engage in a whole range of contributing activities for which we are not paid, but these are not a substitute for paid work. Too often people living with mental health challenges end up working many hours a week, if not full time, in unpaid roles. In the language of George Orwell’s “Animal Farm” it would appear that: “some pigs are more equal than others”: the contribution of some people is worthy of payment whilst that of others is not. Such a situation devalues people with mental health conditions and reinforces prejudice, discrimination and low expectations. Numerous randomised controlled trials clearly demonstrate that, if people with mental health challenges are to gain and prosper in employment we need to focus on real jobs, adopt a “can do” attitude, provide all the support that people need both to get and keep work and integrate employment support and clinical treatment from the start (see Bond et al., 2008).
Alongside a home (see Perkins and Repper, 2016 MHS I 20(3)), and love – social networks, intimate relationships and a sense of belonging (see Perkins and Repper 2014, 2015 MHSI 18(2) and MHSI 19(1)), the right to contribute and to be paid for that contribution is central to recovery and citizenship. Although in times of welfare cuts it is important that we help people living with mental health challenges to assert their right to welfare benefits if they are not in work, we must also help to assure their right to work and pursue their careers in appropriate jobs/conditions in line with their interests and abilities, and the right to the support and adjustments they need to make this a reality.
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