Bobby Baker – an artist at the RSA
If you have never come across Bobby Baker, I envy you. I envy you because you have ahead of you the delicious joy of discovering her work. She is one of the most widely acclaimed performance artists working today, and has a large and impressive back catalogue of work which, using the most fabulously inventive methods (plenty of cake), makes art out of the everyday.
And, there’s nothing as everyday as mental illness. In 2009, Bobby exhibited her ‘diary drawings’ at the Wellcome Collection. These pictures, drawn daily over a period of eleven years, depicted Bobby’s experiences of mental illness, in real time, as it was happening to her. Throughout this period, incidentally, Bobby continued to work prolifically, raise a family and continue to forge an impressive career.
Despite her international reputation, and long established success as an artist, Bobby herself had no idea how the drawings would be received or what the impact of going public with something so personal would be. Needless to say, they went down a storm, the Wellcome extended the length of the original exhibition, and it has since been touring, going to Portugal, Belgium and Holland.
The ways in which the exhibition and the book that came out of it have made an impact are wide reaching. The book won Mind Book of the Year in 2011. People recognised themselves and their own experiences in the images. Those with no experience of mental illness felt a glimmer of understanding as to what it might be like. Practitioners and academics in mental health took notice.
Since that exhibition, Bobby has been as busy as ever, her new piece about what it takes to cultivate mental wellness, Mad Gyms and Kitchens, receiving critical and audience approval.
So, when I put a call out to Fellows of the RSA to find out who has interest, experience or expertise relating to mental health and employment, Bobby Baker responded. As a long-time fan of her work, I was ever so slightly starstruck (and definitely not squealing with glee) to see her name in my inbox. As a keen, and in her words ‘patient’ Fellow, she’s been waiting for the right thing to get involved with, and luckily for me, the challenges I outlined sparked her interest.
Today I met with Bobby Baker to discuss her take on the issues around mental health and work. She has a unique perspective, rich with the insight and wisdom that comes from personal experience. Amongst other things, she told me about a new project she’s working on in which she’ll tell the story of the steps along her journey to get to the extraordinary position of influence and leadership she now occupies. It’s quite a story, and the unique way she has of expressing herself, whether in conversation, in her drawings, or in her performance, is bighearted and expansive. Fortunately for the RSA, she’s as generous with her time and ideas as she is in her artistic expression.
Why Stigma Has Had Its Day
In all honesty, I had never heard of The Society for Curious Thought until last week. It says it exists to foster curiosity and intellectual discovery in pursuit of a better future, which sounds good to me. On closer inspection, it turns out to host an eclectic and fascinating collection of articles and contributions covering arts, science, politics, personal experience, the environment and fiction.
As a result of my call-out last week to Fellows and others about mental health and employment, I was contacted by the Society’s Director, Simon Marriott FRSA, and asked to submit an article further exploring the issues I had written about. I was very pleased to be asked, and my piece, Why Stigma Has Had Its Day has just been published.
My article attempts to summarise an issue adjacent to those I raised last week in my two blog posts about mental health and employment – the problems associated with using ‘stigma’ as a conceptual framework for talking about the social exclusion of people with experience of mental illness.
Here’s a taster:
Discrimination and social exclusion are very real aspects of living with the experience of mental illness and the consequences can be grave: loss of opportunity in education, employment, housing and civic participation. Thirteen years ago, the disability rights campaigner, Liz Sayce did her best to change the way we deal with discrimination against people with experience of mental illness. She wrote an important article explaining why using the notion of ‘stigma’ to describe what is actually discrimination is in itself dangerously marginalising. Disappointingly, no one took very much notice, and these days, ‘stigma’ is still the primary conceptual apparatus used to describe what happens when people who have experienced mental illness are unfairly treated.
Sayce’s key point was that the notion of stigma is problematic because it locates the problem within the person with the mental illness. This has the effect of individualising what is really a social problem. It amounts to a kind of victim blaming. Stigma (literally, mark of shame) carries with it the implication of there being something inherently discreditable about the person being stigmatised. Sayce argues that the ‘mark of shame’ should not be attached to the person with the mental health problem, but rather with the person who is behaving unjustly towards them.
It might be tempting to cast aside such issues as being merely semantic trifles. You might think that anti-stigma campaigners are fighting a good fight, and we all know what we mean when we talk about the stigma of mental illness. In fact, the reasons why discrimination against people with mental health problems continues, may well be partly down to the persistence of a damaging conceptual framework. Conceptual models carry enormous power. The implicit assumptions about where responsibility lies, or whose is the problem, determine to a large degree how we approach the issue as a society.
Discrimination: why mental illness is a special case
I’ve had a great response so far to my post about mental health and employment on Monday, and some important issues have been raised. One of the comments made directly in response to the blog was particularly challenging, and pointed to some important issues which I have tried to tackle in some of my previous work on anti-stigma education.
The commentator suggested that people with experience of mental illness being unable to get secure employment leads to them setting up in self-employment and drew attention to the downsides of this. It sounded to me as though the writer might have had first-hand experience of dealing with a freelancer who had continued to work during an episode of acute mental illness. The “ranting paranoid accusations” sound very difficult to deal with indeed, and it is exactly this sort of troubling behaviour that employers presumably have in mind when they say wouldn’t employ someone with a mental disorder. The response also drew attention to the lack of support available to self-employed individuals experiencing mental health problems and the damage that can be left behind for clients and business partners who “tried to work with them in good faith.”
Interestingly, I had a respondent write to me directly (rather than in the public forum) expressing horror at what they saw as inherent stigma in this analysis. However, despite my interest in reducing prejudice and discrimination against people with mental illness, I do not think that this is an instance of such prejudice. In fact, it very helpfully draws attention to what I see as the real nub of the problem in terms of discrimination and stigma in the context of mental illness.
Discrimination is treating someone unfairly on the basis of characteristics which ought to be irrelevant. We are familiar with the idea that not employing someone because of their gender, race or sexuality is unfair, and amounts to sexism, racism or homophobia. It could be assumed that comparably unfair treatment of a person with a mental illness is the same. However, I think that mental illness is actually a special case, and differs from gender, race, or sexuality in the way in which discrimination functions in relation to it. It is different in that, for individuals who experience it, mental illness is not a constant, unchanging feature. Forgive my massive oversimplification, but at the simplest level, if you are a woman, you are a woman every day – your ‘womanness’ is relatively fixed and definite; likewise with skin colour or sexuality.
If you have a diagnosis of a mental illness, your status is not only likely to be, at some level, contested, but also fluctuating, transient and shifting. There is the issue of the hugely various types of mental illness you may have. Furthermore, no matter what your diagnosis, it is likely that you have had periods of your life when you have been less able to function than others, along with periods of your life when you are entirely able to function. In other words, the way in which the mentally ill part of a person impacts on their life is inconsistent.
What this means is that there are times when it is appropriate and right to treat a person with a mental illness differently to someone who does not have a mental health problem – for example when they are currently in throes of madness ‘proper’. However, a person with a mental illness who is free of symptoms and yet is unfairly treated differentially is therefore being subjected to discrimination in the sense that they are being judged on the grounds of characteristics which ought to be irrelevant.
The result of this is that the idea of ‘stigma’ in relation to mental illness simply does not make sense as a fixed dimension of people’s attitudes. The interaction between the fluctuating, changeable nature of mental illness along with people’s context-specific, plural position taking in relation to it is characterised by too much subtlety and nuance to be rendered simply in terms of stigma.
This is kind of complex, and it’s something people might only really come to understand through personal experience – either of going through some kind of mental illness themselves or by being close to someone who has. Another respondent to my earlier post told me about being a manager of staff with mental health problems and regarding them as “weak willed fools”. It was only after experiencing a breakdown himself that his perspective changed and he seemed clear in his conviction that without this personal experience he would never have shifted his view
There is no substitute for first-hand experience. Indeed, one of the insightful fourteen year olds who participated in some research I did said to me, “You can’t know what it’s like unless you’ve been through it yourself. I could talk to someone with schizophrenia, or whatever, all day long, but I still wouldn’t know what it’s like.” But, that’s not to say our capacity for empathy cannot be enhanced.
I’m convinced that attitudes to mental illness in the workplace can be improved, but that only through greater understanding of personal experiences, including those which have been troubling. Most crucially, the difference between a person with a mental health problem who is currently acutely unwell, and someone with a diagnosis but no impeding symptoms is vital to understand if progress is to be made in managing mental illness and employment.
What’s up, doc?
On Tuesday the winners of the Mind Media Awards were announced. These awards give recognition to those media channels that handle mental health issues sensitively, appropriately and without stigmatising. BBC1’s Casualty won the accolade in the Drama category, beating off competition from Holby City and a psychological thriller called Exile. Like I said earlier this week, I don’t watch much telly, and I haven’t seen Casualty for years, but when I saw the list of winners, it didn’t surprise me that the programme came out on top. It’s the sort of show I would expect to do all right when it comes to representation of people with mental illnesses.
More of a surprise was the discovery that only days before winning the award, an episode of Casualty was broadcast in which they managed to get in a stigma-inducing blunder. While I was wandering around the National Portrait Gallery with a doctor friend of mine last night, she asked me if I’d seen Saturday’s edition of Casualty, and whether I’d be writing to the BBC to complain about the stigma. I’ve since checked out the offending episode on iPlayer, and, here’s the problem.
In what I assume is an on-going storyline about a doctor with bipolar disorder, the issue of medication during pregnancy has come up. The character in question has recently fallen pregnant, and is reluctant to stop taking the mood stabilising medication, lithium, because of her keenness to maintain a stable mood during her pregnancy. A concerned colleague intervenes with misgivings about the risks of lithium exposure to the unborn baby. The well-informed doctor says she knows the risks, and that a 10% chance of a heart defect amounts a 90% chance of being normal.
This is the big mistake. It’s also another example of the clumsy use of statistics thrown in just to suit the current purpose. Like so many things, the real picture concerning the potential risk of taking lithium during pregnancy is much more complex, but some evidence suggests the risk of cardiovascular complications is more like 1 in 200 (compared to 1 in 2000 in the general population). A 0.5% chance is very different from a 10% chance.
This paper from 2008 compiles and examines all of the available evidence on this issue and concludes that lithium should be used in pregnancy without hesitation if needed. However, to make this argument, evidence is assimilated and discussed in such a way that does not lead to a single nice, neat, conclusive percentage of risk.
Okay, so Casualty got their figures wrong. But, why is this stigmatising, I hear you cry. Put yourself in the shoes of a newly pregnant mother who has bipolar illness and is taking lithium. Making the decision as to whether to discontinue treatment is a damned difficult one. You, like any expectant mother, are determined to do everything within your control to protect your unborn child. This includes looking after yourself and avoiding bipolar relapse. You look at the evidence, and see that, taking everything into consideration, the risk to your child of continuing to take lithium is probably lower than the risk of harm if you stop taking it. If people around you have gleaned their knowledge of the topic from Casualty, the chances are that they will hold that view that this is a more irresponsible and negligent choice than it really is.
The friend who told me about Casualty’s gaffe knows a real life doctor, who really has bipolar disorder who recently had to make precisely this choice. She was really upset by this misrepresentation precisely because it made her feel people would think she’d been reckless. Perhaps it’s a small point, but it’s the kind of detail that a drama show with a reputation (and indeed an award) for careful treatment of mental health issues should take more care over.
What is evidence anyway?
The idea of rigour is pretty important when it comes to research. In a previous post I’ve expressed the view that we need to acquire and properly understand evidence before investing a lot of money in rolling out interventions. But, that’s not to say that collecting ‘evidence’ for efficacy and effectiveness is always as rigorous as it might appear.
I’m very interested in anti-stigma mental health education, and I do think it’s important to know that approaches to such education are working well before they are rolled out on any large scale. But, how do you know that they work?
Conventionally, quasi-experimental designs are used in which participants complete attitude surveys before and after taking part in an intervention, and differences in attitude scores are compared. Early in my research career, I constructed a questionnaire designed to measure adolescents’ attitudes to mental illness. I followed a rigorous procedure to do this, interviewing young people in order to generate statements to include on the questionnaire, piloting the questionnaire and conducting factor analysis.
Even though my questionnaire was quite well put together, and appeared to be able to produce valid and reliable results, the process of constructing it caused me to develop a highly critical stance in relation to measuring attitudes in this way.
My feeling was that while an analysis of young people’s responses to the questionnaire may able to indicate general trends and patterns in respondents’ views, the instrument was also reductive. In order to generate material for the questionnaire, I held group discussions with young people. The content of these was rich and complex, with individuals frequently holding contradictory views and occupying ambiguous positions in relation to mental illness. The level of detail, nuance and subtlety which I observed during the focus groups could simply not be captured by a questionnaire using a bipolar response scale.
Another limitation of attitude measurement techniques is that they force responses to be recorded as either positive or negative. It became clear through my discussions with young people that ambivalence and confusion were very genuine features of their understanding, which questionnaires are unable to capture.
Not only that, but using a questionnaire to measure attitudes to something as complex as mental illness is problematic for semantic reasons. Most questionnaires about mental illness, including the one I constructed, rely on people responding to the phrase ‘mental illness’, without knowing how the term is understood by individual respondents. Given that ‘mental illness’ can describe such a vast spectrum of experience, from full blown madness, to fairly mild sadness, it may well be that different respondents are thinking about completely different things as they complete the questionnaire.
This has important implications. A common item on attitude to mental illness questionnaires is ‘people with mental illness are dangerous’. If you are imagining a person in the throes of paranoid psychosis, it’s likely that you’ll answer the question quite differently than if you are imagining someone with postnatal depression or anorexia.
The interpretation of the answer to such a question is also problematic. If someone agrees with the statement, their response is interpreted as indicating a negative attitude to mental illness. However, although most people with mental health problems are not dangerous, some people with mental illness do sometimes do dangerous things. It is possible that someone may agree with the statement on the grounds that they know this, but that they are generally supportive towards people with mental illness and therefore hold a broadly positive attitude.
So, although it’s important to have some evidence which demonstrates that interventions do what they are supposed to do, it’s also important to be critical about the nature of that evidence. As Einstein said, “not everything that can be counted counts and not everything that counts can be counted”.
Learning to love stigma
My PhD was about how education might be able to contribute to reducing the stigma of mental illness. Stigma in the context of how it affects the lives of people with mental illness is not a good thing. Having spent a lot of time thinking about stigma from that point of view, I’ve been slightly surprised to find myself considering whether the world needs more stigma, not less.
The context of my deliberation was around the problem of waste, in particular food and food packaging waste. I wondered whether it might be possible to operationalise social stigma in such a way as to make it socially unacceptable to waste food, and to change our attitudes to food packaging.
Stigma has already been useful in some public health arenas, for example with the shift in acceptability of smoking behaviour. The smoking of tobacco is now much more stigmatised than it is glamourised, and although it is not yet clear whether this cultural shift in meaning associated with smoking will lead to an overall reduction in the prevalence of smoking.
The delicate line between the usefulness and hazardousness of stigma has been explored in the context of illegal drug use. In this arena, Neil McKeganey has argued that the stigmatisation of drug use is an important prohibitive factor, but that we need to be careful to make the distinction between stigmatising the use, but not the user.
In the case of wasting food, we have a long way to go before chucking out vegetables that are perfectly edible despite being past their use by date is widely regarded as a form of social transgression. Similarly throwing away aluminium foil after it has been used to wrap food once is probably something that many people do without a second thought, and the cultural shift that is required in order for people to regard this act as shameful is pretty hefty.
I wonder how much of this is to do with the fact that we are blinkered on both sides of the production and disposal chain. Most of us probably don’t know much at all about how aluminium foil is produced. If we did know what is involved in harvesting aluminium from the earth, extracting it, processing it and transporting it, perhaps we would value it more highly and use it more than once. Similarly, it might not have occurred to many of us that aluminium foil never biodegrades. But, aluminium in all its forms is 100% recyclable; not only that, but recycling is 20 times more efficient than primary production. In spite of this, in 2009 the overall recycling rate for aluminium packaging was only 42%. The rest is wasted.
Even armed with this information, I think I would struggle to actively stigmatise a friend or colleague who was putting aluminium foil in the bin. What would the stigmatising look like? It would seem utterly ridiculous to shun them, or to attempt to shame them in front of others. Even just letting them know the facts might make me feel I was coming across all haughty and holier-than-thou.
So, having spent several years of my life grappling with how difficult it is to eliminate stigma, I’m now beginning to think that establishing a new kind of stigma could be just as challenging a task.
Mental illness: the last taboo?
People with mental health problems are the last minority group against whom it’s socially acceptable to discriminate. Sometimes this discrimination comes about accidentally or covertly, Lisa Appignanesi’s recent piece in the Guardian being a case in point. Appignanesi writes that the mental illness ‘industry’ is medicalising normality to a greater extent than ever before. She raises the question of whether the apparent increased prevalence of mental illness is genuinely down to a rising toll of suffering, or whether we have collectively learned to complain more. Appignanesi suggests that the more evidence there is about the increase in mental disorder in the public domain, the more likely we are to label our own problems of living as requiring the attention of a doctor. She goes on to suggest that attending reading groups or going running might do more for sufferers of depression than taking medication and questions the usefulness of psychiatric classification in helping people deal with the problems of their lives.
While I’m sure Appignanesi does not intend to cause offense to people with serious mental health problems, there is a dangerously stigmatising undercurrent to her argument. A distillation of the points she makes might roughly translate as “There’s nothing much wrong with you, you don’t need any pills, pull yourself together.” This might be a useful message for someone who’s struggling slightly with a mild case of the blues, and has the wherewithal and capacity to make a few positive changes in their life. But, for someone with a seriously debilitating mental illness, it is a potentially very damaging message.
A serious problem which Appignanesi does not attend to, is that the category of ‘mental illness’ is extremely dense. ‘Mental illness’ is no more a discrete entity than is ‘physical illness’, and no physician would deign to lump diabetes in with cancer when trying to understand patients’ ways of dealing with their illness. So, when we talk about mental illness, we might be referring to depression, anorexia, schizophrenia, or any of the other 300 or so disorders in the DSM. Within any one of those diagnostic categories lies a huge variation of patient experience and no two cases of any one of these conditions is ever the same. Just as we all have different pain thresholds, we all have differing levels of resilience to mental distress. But, whatever your threshold, there is a level of serious mental suffering which is as intolerable as the most excruciating physical pain. Within the classification of depression, there exists a whole spectrum of experience ranging from unpleasant but bearable gloom which allows one to continue functioning, right down to crippling despair which makes it impossible to get dressed in the morning or go to sleep at night. For those at the dark end of the spectrum, attending a reading group or going for a run are utterly inconceivable activities, and no substitute for proper medical intervention.
Appignanesi is caustic about the use of antidepressants, and it seems to me that this might be because she has in her mind people who are just a bit down in the dumps rather than those who have a serious mental health difficulty. The ‘definite lift’ Appignanesi tells us participating a reading group provides would certainly not have helped Sandra, a woman I met some years ago, who at that moment was desperately waiting for her annual ECT treatment. She told me that ECT was her lifeline, the only thing that lifted her depression sufficiently to make her life liveable, and that without it she would have killed herself ‘several times over’.
I think the point Appignanesi is really trying to make is that it has become very easy for pretty much anyone to walk into the doctors, have a bit of a moan, and leave with a diagnosis of depression and prescription for Prozac. Cultural factors have made it possible for mental illness to be a lifestyle choice. If you can’t be bothered to exercise, eat well, engage in wholesome activities like reading groups, you don’t have to take responsibility anymore because you can just opt for the convenient excuse that you’re ill. Once your GP has agreed that you’re ill, you can slip into the role of patient, and passively wait for treatments to work and experts to make you better. The overlapping agendas of pharmaceutical companies, the health service, and government have come together to feed this situation.
Although Appignanesi’s attack of the usefulness of psychiatric classification is understandable, what we need to understand is that there is a difference between everyday, normal suffering and serious mental illness which requires specialist intervention. It is true that deciding on the cut-off point at which normal suffering becomes mental illness can only be determined using subjective means, and that the boundary is inevitably arbitrary. I agree with Appignanesi that there is something crazy about a world in which literally any kind of idiosyncrasy can be identified as a symptom of mental illness, and that there is a complex range of reasons which explain the apparent increase in prevalence of mental disorder. But, we need to exercise caution when drawing attention to these problems because there are real dangers associated with arguing against the medicalization of ‘normality.’ Firstly, that people who are really suffering and genuinely need help are not taken seriously, and secondly that the advantages that come with understanding that mental health is on a spectrum which we all occupy, are lost. Or in other words, that the stigma of mental illness is encouraged. People with mental health problems are routinely discriminated against at all levels, and normalising mental illness is a far more urgent priority for social progress than is preventing the medicalisation of normality.
The Ambivalence Gap
Three of the most intractable problems in the field of mental health services are stigma; isolation and disempowerment.
Stigma can be partly be combated through educating the public and through marketing campaigns. But there is very little that is better at dispelling stereotypes than direct contact.
Isolation and loneliness can be addressed through neighbourhood activities and institutions that bring people together.
As we recently argued, disempowerment can partly be understood as having a lack of resources in your social network. If you do not know people who can help you to get things done then you are much more likely to feel like you cannot control the forces that act on you. Part of empowering people, therefore, is sustaining and developing their social networks, for example introducing them to people who might be useful to them in the future.
In short, part of the solution to all three of these problems must involve talking about people’s relationships. This can be a tricky subject for mental health professionals and for service users.
I recently chaired a panel discussion around this topic at the One In Four conference.
There was no shortage of at the conference. People were discussing how personal budgets, micro enterprises, co-production and network weaving could all be ways of supporting and developing people’s social networks.
It struck me that this would require a quite different role for the state. Rather than delivering solutions to service users the state would be supporting and sustaining an environment in which people are able to develop their own social networks. If you want a practical example of what this would look like you might have a look at the Southwark Circle project that Participle started.
One of the many reasons why I do not think we are going to see this type of culture change within mental health services is our own ambivalence towards the state. One the one hand there is huge mistrust of the state; we are sceptical on the efficiency of the government (“waste”) and often on the motives of government (e.g. “stealth taxes” or “big brother”). On the other hand there is a strong belief that the government is largely responsible (see this report especially from page 12 onwards) for bringing communities together. This “ambivalence gap” leads to a type of risk adverse paternalism from public services.
Worryingly this means that changing the way public services are delivered means changing ourselves.
RSA Animate
RSA Mobile
