Rights-based protest: tackling discrimination

People stigmatised because of mental illness are a group who are wrongfully shamed, humiliated and marginalised. It is recognised that this kind of stigma is applied to other ‘minorities’: people discriminated against because of gender, race, sexual orientation or disability. The College makes an explicit connection with ‘rights issues’ faced by such groups: ‘We aim for the same success as that achieved against discrimination based on race, gender and sexuality’ (Royal College of Psychiatrists, 1998).

A rights-based approach would seek to counter discrimination by monitoring and enforcing equal access to health care, housing, employment and justice. Achieving equality of this kind might then be expected to achieve practical improvements not only in daily life, but also in self-confidence and social inclusion.

This kind of intervention has a number of benefits. Most important, it is underpinned by moral authority and so does not depend on familiarity, understanding or affection towards the stigmatised group. Second, it does not depend on persuasion or concealment but can insist on the enforcement of rights. (This is the reason why discourse on rights is replete with military metaphors such as ‘campaigns’, ‘battles’ and ‘fights’.) Third, it is a practical course of action, with measurable outcomes.

For example, it has been argued that British mental health legislation ‘discriminates against patients with a mental disorder, supporting prejudicial stereotypes of difference, incompetence and dangerousness’ (Reference Szmukler and HollowaySzmukler & Holloway, 1999). A rights-based approach would target such alleged discrimination. Legislators are amenable to persuasion: ‘non-discrimination’ is one of the principles underpinning the Scottish Mental Health Act currently going through the Scottish Parliament and there has been a call to introduce anti-stigma campaigns to support it.

One critical aspect of rights-based campaigns is that they do not require a change in attitudes. Writing about the institutional racism permeating London's Metropolitan Police force, Ignatieff makes a relevant point:

In the context of psychiatric stigma, such social and political equality would be predicated on a shared understanding of ‘the right to be different’. The limits of such difference, which might include changes in appearance or behaviour, or changes in ability at work, or risk to self or others, would need to be determined by society over time.

Normalisation

A recurrent strand in anti-stigma work is the premise that people with mental illness are ‘just like us’. For example, the College's anti-stigma campaign ‘Changing Minds: Every Family in the Land’ (http://www.rcpsych.ac.uk/campaigns/cminds/index.htm) emphasises the high prevalence of mental disorder. Mental illness, says the campaign's slogan, affects ‘one in four’ of us, effectively ‘every family in the land’. This approach differs from the rights-based campaign in that it targets acceptance, rather than equality. There are two potential problems with this strategy.

First, it risks confusing ‘frequency’ (many disorders are common) with ‘fairness’ (all people deserve equal treatment). Rare disorders are, of course, just as deserving of acceptance as common ones.

A second problem is that even people who are not ‘just like us’, such as those who have cognitive impairment as a result of schizophrenia or people who have not fully recovered from illness and require help in everyday living, still have rights and still deserve our respect. Although it may not be possible for societies to ignore differences between people, they should be able to accept them.

One aspect of this normalising approach is the medicalisation of mental illness. We have long known that disease has always had the potential to arouse ‘thoroughly old-fashioned kinds of dread’, even among relatives and friends of those affected (Reference SontagSontag, 1991). None the less, illnesses like tuberculosis and cancer became less stigmatised as scientific knowledge and medical treatments improved.

More than 250 years ago, the physician George Cheyne hoped that the ‘English malady’ (of ‘nervous disease’) might one day be medicalised, so that it was considered ‘as much a bodily distemper… as is the smallpox or a fever’ (Reference Cheyne and PorterCheyne & Porter, 1990). More recently, Kendell argued that:

Although we might hope that mental illness may one day be considered to be ‘no worse a label than heart disease, diabetes or multiple sclerosis’ (Reference PorterPorter, 1998), this argument has so far failed to convince the general public (Anonymous, 2001).

Although there is evidence that the public are more willing and able now to recognise conditions such as schizophrenia or depression as mental illness than they were in the 1950s, a strong stereotype of dangerousness and a desire for social distance persist (Reference Link, Phelan and BresnahanLink et al, 1999). This may be because mental illness is commonly perceived as being a ‘trait’ (an enduring characteristic of the individual) rather than merely a ‘state’ (of temporary change induced by illness). Unlike most physical illnesses, mental disorder is commonly perceived to be the result of weakness or failure.

There are also important qualitative differences between physical symptoms such as dyspnoea and mental ones such as disinhibition. The symptoms of acute mental illness, which might include adverse changes in personality, behaviour, judgement and speech, are inherently more stigmatising than those of physical illness.

This is not to argue that normalisation and medicalisation are counterproductive strategies, since better treatments and improved outcomes would be a powerful destigmatising influence (and may already have had an effect in Western societies). However, we should encourage a holistic approach to our understanding of mental illness that extends beyond biomedical models.

Information, media and social attitudes

The media have a powerful influence on attitudes towards mental illness and it is therefore not surprising that they should feature so prominently in anti-stigma programmes. Although the intense media interest in psychiatric topics offers a tantalising opportunity to convey an ‘anti-stigma’ message, the outcomes of media intervention are often disappointing.

While short-term interventions using films and literature may change self-reported attitudes, the evidence for longer-term behavioural change is very weak. This may be because adverse stories are the result not simply of media sensationalism, but of a more subtle collaboration between the assumptions of both journalist and reader (Reference Allen and NairnAllen & Nairn, 1997).

Journalism depends on narrative and this often involves selection of facts, interpretation and exaggeration. The media, of course, has an instinctive bias towards reporting the strident or the extreme. While marked bias may lead to distortion, most journalism is not dishonest or manipulative per se. Reporting a story in a way that failed to start from, or work with, existing attitudes is likely to be perceived as propaganda. It would be naïve to expect the media to act as ‘educators’, unless this represented a story in itself.

This is not to excuse stigmatising material in the media, but rather to seek to understand how it comes to be published. These adverse stories, and there are plenty of examples, involve stereotypes and misunderstandings that closely reflect the ignorance and prejudices of the audience. Journalists and broadcasters are generally not cynical propagandists and modifying adverse media stories will depend ultimately on influencing broader population attitudes and beliefs about mental illness.

Why should popular attitudes about mental illness be so stigmatising? Several models have been proposed that seek to understand the negative perceptions of mental illness. For example, a psychodynamic stance argues that we project ‘feelings we find unattractive or shameful to the disadvantaged, including the mentally ill … [we] feel sorry for them or even contemptuous, and thereby distance ourselves from them’. Such projected characteristics are likely to include ‘a sense of incompetence or failure, irresponsibility, irrational and aggressive behaviours, feelings of despair, and perhaps dependency, and a need for care’ (Reference Hughes and CrispHughes, 2000).

Gilbert (2000) describes an evolutionary perspective, in which Darwinian selection pressure would mitigate against mating with both ‘genetic poor bets’ (risk of damaged offspring or kin) and ‘co-operative poor bets’ (whose lack of altruism might be deleterious to the group).

The social and group context of interaction with people who have mental illnesses is also important. Crucially, people are more likely to describe positive attitudes when giving their own opinions than when expressing those of the group (Reference Angermeyer and MatschingerAngermeyer & Matschinger, 1992), even when this contradicts their personal experience (Reference PhiloPhilo, 1996). Eminson (2000) points out that ‘our responses to the mentally ill may be tempered by contextualisation, by a lack of a sense of threat and by confidence in how to respond to the person whose perceptions we cannot share’.

The language used both in the media and in everyday speech is relevant, particularly in informing us about the attitudes and beliefs of the stigmatiser. While it would be a mistake to try to impose an Orwellian ‘Newspeak’, cleansed of potentially offensive words, it is important to try to ensure that certain words retain their uncontaminated meaning. My personal preference would be to distinguish between clinical terms such as ‘schizophrenia’ and ‘psychosis’ and vernacular descriptors such as ‘loonies’, ‘nutters’ and ‘madness’. Clinical words need to retain their specific meaning if we are to communicate effectively about diseases. For example, we should actively seek to prevent schizophrenia (or its derivative ‘schizo’) being used to mean ‘split personality’ or psychosis/psycho to mean ‘violent’. By contrast, almost all of us, professionals, carers and service users alike, use phrases like ‘that's crazy’, or ‘she's losing the plot’ in everyday speech. Attempting to modify this kind of talk is unlikely to succeed and is probably counterproductive.

Start from what people know, not from what you want them to think

Simply imparting accurate information is not likely to be successful unless people's own beliefs, understanding and concerns are taken into account (Reference SeckerSecker, 1999). The lay understanding of health can often diverge significantly from what professionals think that people know.

For example, a study of Scottish schoolchildren's perceptions of mental health (Reference Armstrong, Hill and SeckerArmstrong et al, 2000) showed that, while most children could define either ‘mentally’ or ‘healthy’, the phrase ‘mentally healthy’ just was not understood. In other studies, general education about schizophrenia was much less useful than targeting information about dangerousness (Reference Penn, Guynan and DailyPenn et al, 1994).

Target the audience

Young people are a particularly important group, not only because their opinions and knowledge will determine future attitudes, but also because of the high prevalence of mental health problems in childhood and adolescence. Not only are children and young people interested in this area, but they also need accurate information. Local needs should direct anti-stigma initiatives: for example, in some areas, this might mean improving liaison with the local accident and emergency department; in others it might involve improving training for staff at the benefits agency.

Plan, and act, for the long term

Many interventions have shown marked short-term improvement in reported attitudes, but maintaining this effect is a major challenge. Significant changes in behaviour and systems take place so slowly that they are difficult to measure, but this should not deter anti-stigma programmes from planning for the long term.

Multi-agency working

User, carer and voluntary sector involvement is crucial. ‘A quality service would … treat patients and service users with dignity, creating the right environments for them to recover from illness and being guided by their views on how services should develop’ (Reference ApplebyAppleby, 2000). Initiatives from the ground up should be encouraged, particularly where these coordinate with ‘top-down’ projects, such as advertising or educational campaigns.

Act simultaneously across several domains

Anti-stigma initiatives in public education, media, legislation and academic research tend to support and cross-fertilise each other. Promoting better mental health in advertisements, for example, will be perceived as propaganda unless there are services ready to back up the message with action.

Psychiatrists should be visible

The history of our speciality is not altogether positive. Byrne (2000) has argued in this journal that discredited psychiatric practices (for example treatments for homosexuality, eugenics, insulin coma treatment and frontal lobotomy) have contributed to current misunderstandings about mental illness. Psychiatrists have been criticised for their ‘neglectful and uncaring’ use of major tranquillisers (Reference BrittenBritten, 1998), and a recent document published by the British Medical Association (BMA), and and the Royal Colleges of Psychiatrists and of Physicians of London (Royal College of Psychiatrists et al, 2001) recognised that up to 40% of patients presenting to their general practitioners with mental health problems felt discriminated against. There is an active ‘anti-psychiatry’ movement through much of Europe and North America.

Such criticism needs to be acknowledged and tackled directly. In particular, psychiatrists need to be wary of feeling contaminated by association with adverse aspects of mental illness. For example, where services are poor, we should join with users and carers to try to improve them; where drugs have adverse effects, we should be honest about them, and try to promote patient choice. Unless the profession is able publicly to explain and defend our work and values, we risk being caricatured and stigmatised ourselves.