Emma Lindley

Why Stigma Has Had Its Day

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.

Sometimes the terms ‘stigma’ and ‘discrimination’ are used synonymously, but there is a crucial difference between the two. The concept of discrimination is fundamentally behavioural and to do with the way in which people respond to and treat other people. Stigma, on the other hand, refers to the characteristics on which people are judged. Stigma and discrimination are obviously related in that discrimination is treating someone unfairly on the basis of characteristics that ought to be irrelevant. We are familiar with the idea that paying someone less for doing the same job because of their gender, race or sexuality is unfair, and amounts to sexism, racism or homophobia and all forms of discrimination. It could be assumed that comparably unfair treatment of a person with a mental illness is the same.

If so, we shouldn’t talk about stigma, we should talk about ‘mentalism’ and it should be the ‘mentalists’ who are stigmatised, not those with the mental health problems. Clearly, there’s a problem of terms in this instance and perhaps part of the reason we don’t use such language is because of the lack of an appropriate vocabulary.

However, mental illness is, in my view, 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 most individuals, their mental illness is not a constant, unchanging feature. Forgive the oversimplification, but very loosely, if you are a woman, you are a woman every day and your ‘womanness’ is fixed and definite; likewise with skin colour or sexuality. If you have a diagnosis of a mental illness, 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 well. In other words, the way in which the mentally ill part of you impacts on your life fluctuates, is inconsistent, variable. People with experience of mental health problems often report that the effects of stigma and discrimination impact on their lives more negatively than the symptoms of mental illness. One of the reasons for this may be that differential treatment is felt particularly strongly during times when they are free of symptoms of mental illness, and is therefore unfair and does amount to discrimination. However, at other times, when a person is currently affected by the symptoms of their mental illness, it is appropriate to treat them differently to someone who does not have a mental health problem.

Crucially important to this is the notion of unfairness. Whether or not differential treatment of an individual with a mental health problem is fair determines whether they are being discriminated against, and to know whether differential treatment is fair or not, is entirely dependent on the specific features of individual circumstance. To illustrate, let’s create an imaginary person with a mental illness.

Patrick is 45. He was diagnosed with bipolar disorder at the age of 22, while studying medicine. During his twenties, he had three major episodes of mania, each of which required hospitalisation. During his manic phases he was obsessed with the idea of the demise of the earth, believing that planting human organs in the ground would save the world. Each manic episode was relatively short-lived. Psychotherapy, self management training and mood stabilising medication all helped Patrick to get on with his life and despite periods of being unwell during his twenties, he completed his medical training, and went on to become a renal surgeon. His last episode of mania was 18 years ago and he no longer takes any medication, practising mindfulness meditation to manage stress in his life and get through periods of depression. He is a well-respected surgeon.

So, let’s assume I am a patient of Patrick’s, due to be operated on by him. I discover the above description of his mental health history and on the basis of that information, decide that I wanted to be treated by a different doctor. Is my decision unfair? Would it be true to say I was discriminating against Patrick because of events that happened a long time ago and which were no longer relevant to his professional proficiency? As far as we know, Patrick is currently unaffected by his diagnosis of bipolar disorder and is a competent and capable physician. To refuse to be treated by him because of his history of mental illness surely amounts to discrimination.

Let’s now imagine that Patrick is currently affected by his illness. He experiences another episode of mania and his fixation with the need to plant human organs into the earth to save the world returns. He believes that he is a prophet, and his mission is to harvest organs from people to rescue the planet from certain annihilation. Not wanting to be operated on by a surgeon who was currently experiencing acute psychotic symptoms such as these, is a different matter entirely. It would obviously be rational to feel unsafe in Patrick’s hands in these circumstances. Although I would be refusing to be treated by a doctor on the basis of mental illness, in this case, such a decision could not be said to be discriminatory, because his current mental state may well impinge on his ability to do his job properly. In both scenarios, a patient does not want to be treated by a doctor with a mental health problem. In the first scenario, discrimination (unfair treatment) is in evidence, whereas in the second, the differential treatment is not unfair. The characteristics that make the patient not want to be treated are relevant and therefore the behaviour cannot be said to be discriminatory.

Trying to ‘reduce the stigma of mental illness’ is a valiant pursuit, but is damaged by the inadequacy of its own conceptual basis. Many anti-stigma campaigns have tried to change people’s attitudes by trying to simplify a complicated issue. The assumption underpinning much anti-stigma work is that if people are educated with messages such as ‘mental illness is an illness like any other, which can be treated with medication’ then they will stop stigmatising it. But, there are many ways in which mental illness is not like any other illness – the social and political dimensions in the construction of it being one example. Oversimplified anti-stigma initiatives are destined to fail because they do not acknowledge or attend to the true complexity of mental illness, and they do little to engage with people’s genuine fears about the ways in which mental illness causes people to behave in ways that can be very worrying.

If we are to improve the ways in which society responds to those with mental health problems, we need to grapple with these problems of ambiguity and multiple meaning. The fact that people currently experiencing acute symptoms of mental illness are different from the general population, and maybe should be treated differently cannot be overlooked. The real issues which anti-discrimination efforts ought to focus on is that people can and do recover from mental illness, that mental illnesses are various, fluctuating and not to be feared. Where discrimination in the truest sense kicks in is when the effects of having been labelled as mentally ill continue to have negative consequences during periods of wellness or after a person has recovered.

Mental illness is not only complex, it is an essentially contested phenomenon. Whether madness and sadness and the unusual behaviours associated with them are even ‘illnesses’ at all is an unresolved philosophical and political question. Given this, treating mental illness as a ‘natural kind’ in terms of how we attempt to improve the social positioning of those who experience it is inadequate. Trying to encourage a blanket attitude that ‘people with mental illness are just like everyone else’, is pointless. What is needed is actually to find ways to equip ourselves with the resources to be able to navigate and make sense of an inherently complex phenomenon and to respond to it with empathy. This is not something that can be achieved with a quick-fix media campaign, and certainly cannot be done by peddling simplified versions of essentially contested concepts of mental illness.

However, it is potentially quite threatening for the psychiatric profession to promote the exploration of these sorts of complexity. The need to uphold and maintain the legitimacy and credibility of the profession may act as a barrier to taking the risk of encouraging the public to take on board the multiple possibilities about mental illness, including those which challenge the biomedical model. As the clinical psychologist and sociologist David Pilgrim & Ann Rogers pointed out in an article published in 2005, anti-stigma education designed by psychiatrists has historically tried to do the opposite, aiming to close the gap between what is presented as professional knowledge and public misconceptions. The ubiquitously cited aim of anti-stigma enterprise to “improve help seeking” represents an effort to de-stigmatise mental health services rather than the individuals who experience mental health difficulties. Pilgrim & Rogers further argue that contra the arguments of psychiatry, diagnosis and contact with services is frequently unhelpful to the patient, particularly in respect of discrimination and social exclusion. If this is the case, psychiatric practice is in fact part of the problem of ‘stigma’ rather than part of the solution.

Given that mental illness sometimes causes people to behave in ways that are frightening, disturbing and unusual, it is vital that we find ways to engage with this reality. In light of the competing concerns that make up the way mental illness is approached by employers, policymakers and people in general, it’s no wonder that we haven’t made much progress in terms of reducing the social exclusion of the mentally ill.

Liz Sayce was right. What is needed in order to improve social responses to mental illness is a reframing of the issues; a conceptual shift. When you step outside the terms of the dominant discourse, you can begin to see that what we call ‘stigma’ is in fact only one dimension of a complex set of issues. Unfair treatment of people with experience of mental illness is discrimination. Suspicion and uncertainty about how to respond to those who are currently in an acute state of madness are expectable human reactions to something that is difficult to make sense of. As for stigma, that’s an old-fashioned concept that’s getting in the way of real progress

Emma Lindley