Stigma, Noun. A mark of disgrace or infamy: a sign of severe censure or condemnation, regarded as impressed on a person or thing; a ‘brand’.
Oxford English Dictionary.
In ancient Greece, the verb stizo described tattooing of the skin to mark out those who were the property of others or those who had committed crime; stigma was the external evidence of wrongdoing or of ownership and servitude. In time, it has moved from being a visible marking to that of an attitude directed at those who are different from the majority and tattoos now generally take on a decorative function.
In his 1963 book (1) Erving Goffman (1922–1982), a Canadian sociologist, brought greater clarity to understanding stigma by defining it as “a socially conditioned response to someone who is seen as different”. In his paradigm he recognised three groups: the ‘victim’ who bears the brunt of stigma, the ‘normal’ who do not have the discrediting attribute and may stigmatize the ‘victim’ and the ‘wise normal’. The ‘wise normal’ is a non-judgmental member of the public, family or network member, voluntary organization or healthcare professional who is informed and understands the nature of the attribute that sets the ‘victim’ apart. The ‘wise normal’ may themselves become the target of stigma through their association with the ‘victim.’ Finally, there are two types of stigma: ‘enacted stigma’ where it is real and ‘felt stigma’ where it is perceived but unreal. Many of those who belong to a stigmatized group experience both types as one inevitably leads to the other. Stigmatization is a process by which the ‘normal’ spoils the identity of the ‘victim’. To reduce stigma, ‘normals’ need, through being better informed, to become ‘wise normals’; but more of this later.
Why are persons with epilepsy so stigmatized?
Some years ago Neurologist Rajendra Kale wrote that ‘the history of epilepsy can be summarized as 4,000 years of ignorance, superstition and stigma, followed by 100 years of knowledge, superstition and stigma’. To understand why this remains true today one has to go back into the history of epilepsy and the manner in which it was and continues to be portrayed to the public at large. In ancient times, while those with epilepsy were initially regarded as sacred or even geniuses, the fear prevailed that it was the result of demonic possession and could be cast on someone as a spell or transmitted by physical contact. This resulted in demonization and social abandonment. This image of uncleanness and sin was perpetuated in the bible and other religious texts by claiming the ‘casting out of sin’ as a cure. In the middle ages such myths and superstitions often led to those with epilepsy being accused of witchcraft and persecuted. Initially passed on by word of mouth, these beliefs soon became enshrined in the literature of the time. In the nineteenth century, persons with epilepsy found themselves outcast and confined to workhouses, prisons and asylums with the widely held belief that the condition was associated with insanity and even criminality. In the twentieth century, while the recognition of epilepsy as a medical condition led to the development of rational treatments, stigma persisted. This stigma was stoked by the eugenics movement, punitive laws and lack of opportunity in relation to marriage, emigration, education and employment. Even into the 1970s, health clubs and restaurants could legally prohibit entry to persons with epilepsy. All of this was exacerbated by the manner in which those with epilepsy were portrayed in the media and popular culture. For example, the representation of those with epilepsy in movies was, with a few exceptions, negative and pejorative. Whilst there have been significant improvements in the public’s perception and attitudes towards epilepsy, this is not worldwide and in many counties, such as the Democratic Republic of the Congo, misbeliefs about possession and contagion still persist.
What can be done to reduce stigma?
It is self-evident that stigmatization impacts upon the quality of life of those with epilepsy by reducing the life opportunities that are open to others. Anecdotal studies suggest that epilepsy stigma has declined in recent years but the lack of robust methods for measuring this makes it difficult to quantify. The route to improvement is through education but what is the incentive for those with no experience of epilepsy to learn about it; and, if successful in getting a message across, how long would it be remembered? The International League against Epilepsy (ILAE) set up a Task Force on stigma in epilepsy. They reviewed published papers on stigma-reducing interventions and how their effectiveness was measured (3). Interventions studied included workshops, seminars, courses and public education programmes. These were targeted towards those with epilepsy and those without; the latter including teachers, health care professionals, service providers and relatives of those with epilepsy. Effectiveness was measured by various self–reporting questionnaires. Out of nearly nine thousand published studies only thirty-eight were considered adequate for analysis and many of those were judged to be too short and involved too few participants. Also, because they used differing questionnaires, comparison of one intervention with another was prevented. One-off courses and programmes delivered to only a few can only realistically scratch the surface of the problem. If these stigma-reducing interventions have proven so difficult to evaluate, what alternative approaches might be more productive?
Behavior and perceptions are influenced by internet content with its capacity to reach and inform a large audience. Though measuring effectiveness and assuring accuracy is problematic, social media platforms offer the epilepsy community the best opportunity to reduce stigma through communicating with each other and informing the wider public. It is here, rather than through the archaic delivery of lectures and courses, that stigma can best be countered and yet the ILAE review makes no mention of this route; perhaps because they cannot regulate content?
Reducing stigma can also be achieved through example by showing that people with epilepsy are no different than anyone else and are capable of positively taking their place in all walks of life. We are talking about champions and role models and, harking back to my earlier article, we need them to step forward and own their epilepsy and normalize it for what it is: just one of many other long-term conditions Only when those with epilepsy have the same life opportunities as others can stigma be said to have been truly banished. Communicating openly about it is the key. Epilepsy, like sex and death, must be made speakable. Only then can we begin to banish the ghosts that for so long made it mysterious, threatening and stigma-creating.
References
1. Erving Goffman (1963) Stigma: Notes on the Management of Spoiled Identity. Prentice-Hall.
2. Rajendra Kale (1997) “Bringing epilepsy out of the shadows”. British Medical Journal 315.
3. Austin JK, Birbeck G, Parko K, et al. Epilepsy-related stigma and attitudes: Systematic review of screening instruments and interventions – Report by the International League against Epilepsy Task Force on Stigma in Epilepsy. Epilepsia. 2022; 63(3):598-628. doi:10.1111/epi.17133, 10.1111/epi.17133
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