Mental health is a globally pressing issue. Conservative estimates suggest that 400 million people worldwide suffer from various mental illnesses, while the World Health Organisation predicts that by 2030 depression will be the world’s leading cause of the burden of disease, with mental health problems already exacting a greater toll than tuberculosis, cancer, or heart disease.
Yet look at this global picture more closely, and to some observers it appears as though this burden might not be spread evenly around the world. With recovery rates for schizophrenia and depression in the USA, UK, and other wealthy countries worse than those in Nigeria, India, and other developing nations, it looks as though the poor world is outperforming the rich when it comes to dealing with some mental disorders.
Theories as to why this may be abound. These range from the perhaps outdated and stereotypical idea that there is a greater tradition of family and community solidarity in economically developing nations, to the social anthropologist Tanya Luhrmann’s theory that a combination of greater stigma and “disgraceful” normative care practices in the West often mean that sufferers of devastating mental disorders like schizophrenia concurrently experience a range of other afflictions – ostracism, homelessness, poverty, substance addiction and a set of humiliating interpersonal experiences that she calls ‘social defeat’.
Last night, in his RSA lecture entitled ‘The Global Mental Health Crisis: What the rich world can learn from the poor’, Professor Vikram Patel of the London School of Hygiene and Tropical Medicine offered a slightly different perspective. Focussing on access to care, he gave examples of the relative ingenuity of mental health care practices in countries like India, where he has done extensive work.
There is, he said, no shortage of psychiatric professionals in wealthy Western nations; for example California alone has more psychiatrists than the whole of South Asia. Despite this, some 60% of people with mental illness symptoms in the USA do not access any form of psychiatric care. The UK, even with its free-of-charge National Health Service, only performs slightly better, with 40% of sufferers not seeking or receiving treatment. As explanations for this he pointed to the sometimes alienating, over-complicated professional culture of DSM-influenced approaches to mental illnesses in the West, and the remoteness of psychiatric practitioners to their patients in both lifestyle and outlook as reasons for people not knowing about or feeling they can access services.
By contrast, he presented a model of public health in India that, with limited resources in the form of professionals or pharmaceuticals, utilises lay community health workers to provide collaborative, locally appropriate community-based care. Specially trained lay workers operate under the direction of psychiatric professionals to provide outreach services, ‘psychiatric first aid’, and social interventions based in the home, in a Wellcome Trust-funded controlled trial, documented in a series of documentaries available online.
Back in the UK, the RSA is looking to draw upon a similar approach as part of its Connected Communities project, which seeks to explore ways of building resilient communities in which people’s wellbeing and life satisfaction benefit from social connections with their peers. Working with Nicky Forsythe of Positive Therapy, we shall shortly be launching an innovative Talk For Health peer support programme which will train key members of community networks as lay counsellors, giving them the confidence and knowledge to take the therapists’ skills of empathy, non-judgemental listening, and conversational support out of the doctors’ surgery and into the hands of the community. In Bristol, we’ve just launched an innovative tablet computer app called Social Mirror, which volunteer health champions will use to help people map their social networks and, where necessary, receive suggested social prescriptions. Simultaneously, we are working with Talk To Me London to launch an exciting pilot project in New Cross that seeks to encourage Londoners to engage in conversations with strangers, with participants identified by their ‘Talk To Me’ badges which show that they are friendly and willing to chat. The designers of the project promise that it will “be the most innovative, culture-changing campaign of our times”, so stay tuned for more on that.
With ever-increasing strains on public health and social care budgets, and worrying research that demonstrates links between social isolation and the risk of mental illness and death, it is hoped that we can learn much from Professor Patel and others in the ‘poor world’ who are demonstrating that innovative, ingenious social interventions can help manage the burden of mental illness by supporting connected communities. Keep checking this blog, follow #RSAConnected and @SocialMirrorApp on Twitter, or email firstname.lastname@example.org and ask to join the relevant email lists to keep updated with how this work progresses.
The stigma of mental illness is alive and well. Despite the fact that campaigns like Time to Change have been working hard to eliminate stigma and discrimination against people with mental health conditions, it seems that it’s still all too easy to casually slip into a culture of blame.
A short article in the Guardian published this morning reported the results of a study that indicated a link between being a child of parents with mental health problems and being at risk of harm. That such a link exists is troubling, and our response to this ought to emphasise the need for better provision of support where it is needed most.
Maev Kennedy’s piece starts with very much the wrong tone, with the sub-heading: “Report by Ofsted and Quality Care Commission reveals that 30% of adults with mental health problems have children.” This reads as though a shocking number of (by implication) irresponsible and dangerous parents with mental health problems have children, and really ought not to.
Kennedy doesn’t make a comparison with overall figures for having children. The stats are a little difficult to decipher, but my interpretation is that roughly 39% of couples across the population have children, so what is striking amongst people with mental health problems is that the proportion having children is significantly lower.
The case example Kennedy chooses to provide is that of a mother whose children “were only taken into care when their mother went into hospital” going on to describe a woman who had not showered for six months, rarely left the house and spent most days asleep. It sounds as though this woman was suffering from crippling depression, and was in desperate need of proper help and intervention, not for her children to be taken into care as soon as she began to show signs of distress.
Kennedy’s piece finishes with the damning line, “although an estimated 30% of adults who experience mental health problems have children, there is no national obligation to notify relevant authorities or collect information on how they are coping.” This almost makes it sound as though having a mental health problem is akin to being a paedophile, and that some sort of national register should exist to monitor the parenting abilities of anyone who experiences difficulties with their mental health.
My guess is that the piece was written quickly and that its author probably did not intend to produce an article that exhibits stigma and has a tone of judgement and blame. However, it is this type of subtle stigma that perpetuates damaging stereotypes and allows marginalisation and othering of people with mental illnesses to continue.
I recently outed myself as something of an evangelist for cycling. If everyone took to their bikes instead of cars and buses for short, local journeys, we really could make a massive dent in our carbon emissions. We’d be fitter, healthier, more energised.
Cycling could even save your life: according to statistics out yesterday, almost 37,000 deaths UK deaths a year are directly caused by physical inactivity. Cycle to the local shops every now and then, and you could avoid being one of them.
In my previous blog post, I wrote about some of the attitudinal barriers to cycling – our perception of danger, of inconvenience, the need to wear special clothing and thereby become part of an in-group clique. The consensus is that these things are relatively minor and that the real hurdle is the lack of a proper infrastructure for cycling, and this is something I’m largely convinced of.
But it occurred to me that there might be something else going on as well. In the past, I’ve carried out detailed research looking at stigma, and I started thinking that maybe cycling, like mental illness (the topic of my doctoral research), is stigmatised.
How have I arrived at this idea? Well, stigma, according to Erving Goffman is a special kind of relationship between attribute and stereotype. Traditionally, stigma is associated with a discrediting characteristic, a taint or mark that prevents an individual from being regarded as normal. Stereotypes about that discrediting characteristic are then applied, wholesale, to anyone who has the attribute, and those people are then ‘othered’ or shunned.
cyclists are viewed as deviant by motorists in particular, but also by wider society
Can this really apply to cyclists? I think so. Cycling is both a minority mode of transport and a marginal activity. Research conducted by the DfT in 2010 showed that cyclists are viewed as deviant by motorists in particular, but also by wider society. If cycling is a minority pursuit, then anyone who engages in it is, by definition, outside the mainstream.
When it comes to imagining what stereotypes might be associated with cyclists the sorts of things that spring to mind include: irresponsible road use (jumping red lights, cycling on pavements, not using lights at night) and green, liberal politics, perhaps more radical than your average Guardian reader.
The DfT paper found that the most commonly held stereotype of cyclists amongst other road users is characterised by two things:
- A serious failure of attitude including a generalised disregard for the law, combined with a more specific lack of concern for other road users
- Serious failures of competence and knowledge of the rules of the road
The paper reported that this stereotype of cycling is linked to the fact that cyclists don’t need to undertake training, are unlicensed and uninsured, do not pay road tax* and bikes do not need to pass a test of roadworthiness.
This paints a pretty damning picture, and if these stereotypes really hold true, it’s no wonder that cyclists are so easily ‘othered’ and stigmatised by car users, pedestrians, bus drivers, and people in general.
There are other stigmatising factors at play as well. I have observed that cycling in cities is often regarded as being both dangerous and unpleasant. It follows that anyone choosing to voluntarily take part in an activity that is unsafe and unenjoyable must be a little bit weird. Combine that with the DfT’s findings about reckless disregard for the law and a dangerous lack of competence, and you’ve got a pretty strong set of reasons why someone contemplating taking up cycling would choose not to. Who would want to start doing something that was going to give them that sort of image?
If I’m right, and there is a social stigma attached to cycling and cyclists, perhaps a different sort of approach to encouraging cycling needs to be taken. Sure, infrastructural improvements are definitely needed. But perhaps, in addition to trying to convince people to try riding a bike, we also need to focus on the wider social structures and stigma that make it unappealing.
Time to Change is a campaign to end mental health discrimination. Would it be an absurd idea to launch a comparable campaign to end the stigmatisation of cyclists?
* It is a common misconception that such a thing as road tax exists. Cars are taxed based on CO2 emissions: see ipayroadtax.com for more details
Yesterday saw the publication of a new article of mine in the Journal of Public Mental Health. It’s titled ‘Inclusive Dialogue: The Way Forward in Anti-Stigma Education?’ Inclusive Dialogue is an educational technique I developed during my PhD research, and the article discusses the impact it had on the young people taking part. As you need subscriber access to view the full PDF, I’ll use this blog post to give you a flavour of the piece.
Reducing the stigma of mental illness is a major public health issue. Historically, the anti-stigma agenda has been largely controlled by those holding most power in the field – predominantly psychiatrists. This has led to anti-stigma initiatives drawing primarily on a biomedical model, emphasising similarity between mental and physical illness, stressing that mental illness can happen to anyone and that it should be treated with medication. However, there is a growing body of evidence that the biomedical approach to reducing stigma is not only ineffective, but can actually increase the very phenomenon it aims to ameliorate.
My work on inclusive dialogue aimed to develop a viable alternative approach to education about mental illness. The inclusive dialogue process consisted of a series of discussion workshops with a group of seven young people aged 14-15. The aim was to encourage participants to share and explore understandings relating to mental illness. I intentionally avoided being didactic, but rather set out to give young people opportunities to share and explore their own existing ideas and to reflect on their responses to stimulus material.
I intentionally avoided being didactic, but rather set out to give young people opportunities to share and explore their own existing ideas and to reflect on their responses to stimulus material.
I used a number of springboard techniques from which to launch conversations, including the use of photo-vignettes, a narrative building exercise, language audit, media-based activities and exploration of first-hand narratives of mental illness.
All of the activities aimed to foreground personal experiences of mental illness rather than to consider the concept in the abstract, or purely in terms of diagnostic categories. The young people taking part were encouraged to take an active role, bringing their own experiences and understandings to the discussion.
The approach was informed by the principles of constructivist education. The aim of constructivist education is personal autonomy – to enable young people to be governed by themselves, and to think logically about any subject or issue, drawing on their own resources to form both understandings and opinions. Inclusive dialogue represents an attempt to apply this philosophy to the delivery of education about mental illness, guided by two broad aims. First, to enable young people to look at the issue from a number of different perspectives, and second, to equip them with the resources to construct open and positive positions towards other who are experiencing or have experienced mental illness.
At the end of the inclusive dialogue process, I interviewed the young people who had taken part to find out how they felt it had affected them. The young people reported that as a result of taking part they had become more confident and comfortable in being able to talk about mental illness. They discovered a number of things that they had not previously appreciated, including that there can be positive aspects to having mental illness, and that having a mental illness does not necessarily mean a person will have a substandard life.
They felt they would be less scared if faced with a friend or family member experiencing mental illness and that they would have the resources to know how to respond. They also reported increases in knowledge and understanding, along with having more resources to be able to empathise with the experience of mental illness. Most importantly, they seemed to enjoy the process, as this comment from a member of the group demonstrates:
“The best thing I did in school all year was that thing you did with us where we had to choose a picture and decide on what the person would be like and stuff, if they had a mental health problem.”
My work was encouraging, in that it showed inclusive dialogue has the potential to be a viable alternative to biomedically-based anti-stigma work, and that it can help to shift young people to being more open, empathic and supportive towards others with experience of mental illness. Given that mental health issues are an unavoidable feature of the landscape of the social worlds young people inhabit, the need to promote greater understanding of mental illness in society becomes ever more pertinent. The study I conducted adds to the body of evidence that there is a place for education about mental illness in adolescents’ lives and I would be delighted to see more teachers broaching the subject with their pupils.
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.
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.
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.
for individuals who experience it, mental illness is not a constant, unchanging feature
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’.
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.
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.
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.
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.
not everything that can be counted counts and not everything that counts can be counted
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”.
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.