'The Perception of Epilepsy in the 21st Century'
Part I: The project
I intend to produce a radio documentary of about 20-minute length, with a working title being 'The perception of epilepsy in the 21st century'. The product will aim at not only explaining the condition and its effects, but more importantly, dealing with the perception of epilepsy in the medical institutions, different religions, society and the people who suffer from the condition themselves.
Part II: Rationale
There are radio and film productions that deal with epilepsy. They range from audio and video documentaries to fiction films based on real events and radio shows, dedicated to the subject. However, they all deal with either explaining the medical side of the condition, the different types of seizures; or the supposed causes and different available treatments; or the level to which a person's life and their relatives' lives are affected by the condition.
What I aim to produce is a project that challenges the perception of epilepsy as a result of the socio-cultural environment we live in, as shaped by the media and those in power. For instance, the Spiral of Silence theory, developed by the political scientist Elisabeth Noelle-Neumann, explores the effect of mass media and society on the formation of public opinion. “Observations made in one context spread to another and encouraged people either to proclaim their views or to swallow them and keep quiet until, in a spiralling process, the one view dominated the public scene and the other disappeared from public awareness as its adherents became mute” (Neumann 1993: 5).
At the same time, we can discuss the effect of power on the formation of public opinion and perception from a media theory point of view: Baudrillard theorises that in today's society, there is “a collective demand for signs of power”, which everyone belongs to, as they are afraid of a collapse in the political system (Baudrillard in Kellner 1989: 133). Power is also, in the words of Barthes, “the parasite of a trans-social organism, linked to the whole of man’s history” (in Eco 1977: 240). And at the same time, history and social memory become vital in connecting the past to the present and making sense of our place in the world (Jameson 1983). Additionally, Lyotard talks about the totalising nature of metanarratives, which exist in the post-modern society (1984). Metanarratives, he means, are those 'big truths' and views about the order for the world (the formed perceptions of what is 'normal', for instance, or what is masculine/feminine; in general, most of the stereotypes in today's world).
Drawing conclusions from these theories, it is possible to challenge our perception of a condition such as epilepsy. The project is not aimed at explaining the process of epilepsy and all the different types of seizures, the diagnostics and treatments. It is to deal with the perception of epilepsy, rather than the condition itself, and challenge that perception as one not 'naturally-formed', but pre-determined by our position in today's socio-cultural mediated environment. The reason for this is not only that there is other such material in both radio and video format, dealing with those specific subjects, but also because drawing on my background in media, I find it fascinating to examine the formation of perception and the effects on medicine, religion and the people themselves.
Part III: Inspiration
The motivation for this project came after the passing of my friend, who suffered from epilepsy, as there was a lot of anger towards the lack of understanding of this condition in the 21st century. But also, as a result of my few conversations with her about her condition and the way she 'perceived' it, as well as what her mother has shared with me about the early stages of the epilepsy and the way my friend was 'dealing' with it, I came to realise it was a diagnosis, which often created a lot of negative feelings in the patient.
What made an impression on me in the film 'Many Lives: Managing the Epilepsies' was the extent to which there was emphasis on leading a 'normal' life (from both the doctors and the patients themselves). As we gradually conclude in media studies, it is virtually always possible to challenge the word 'normal', as what we know as 'normal', is actually not the biologically natural. It is the socio-culturally formed.
Dr Kevin O'Shea, one of the specialists interviewed in 'Many Lives' said: “There's still a great deal of myth out there about epilepsy, people don't fully understand how effectively it can be treated and also that with effective treatment, people can return to a virtually normal life. Similarly, people don't understand the impact of not treating in effectively and may find it difficult to comply with whatever treatment options have been offered.”
However, in the same film it is often expressed that some forms of epilepsy are mild and there is no real danger (except for trauma from falling, as well as choking on something, which is technically a danger we all face in our everyday lives). Yet medication is prescribed for all various forms of epilepsy. This led me to wonder why doctors kept expressing the need for a person to lead a 'normal' life by suppressing their epilepsy, which is interfering with that normality, yet the side effects of anti-epileptic drugs (such as effects on the cognition and memory, as well as general fatigue) interfere in a person's life and abilities in a much greater way.
“My previous decision not to take medication for my diagnosed epilepsy is a choice I have had to defend on numerous occasions: to GP’s and specialists ranging from the well-intentioned to the dogmatic, family and friends, employers, witnesses and now my insurance company”, my friend had written, as the medication prescribed to her was severely affecting her memory and concentration and was creating high amount of tiredness and sleepiness, which was preventing her from leading a 'normal' life.
What is even more interesting in the statements made by Dr O'Shea, is the idea of a sense of loss and embarrassment, brought by either the diagnosis or the manifestation of epilepsy. “[When patients receive the diagnosis], there is a large part of their live they feel they've lost. For the individual, that can mean a sense of believing your life is almost over. People become quite passive. A lot of family, friends and spouses of people with epilepsy are acutely embarrassed that somebody has a seizure in a public place.”
The Department for Education in the UK cites asthma, diabetes, epilepsy and anaphylaxis as the four more common medical conditions. Yet epilepsy is the only one of those four to ever be perceived as something embarrassing or shameful. Additionally, in Bulgaria, for instance, a student with asthma is allowed to surpass certain exams in school, although studies don't show specific effects of asthma on one's learning abilities (unlike epilepsy, where cognition, concentration and memory are affected, and also by the medication). Yet it is still the epilepsy which is perceived as being a disability and something that interferes with the leading of a 'normal' life, something which is embarrassing to people and creates a sense that they cannot do anything with their lives any longer or will need to be dependent on somebody else for the rest of their life (i.e. being unable to take a bath or shower, unless there was somebody guarding).
Additionally, from a religious point of view, epilepsy was perceived as a demonic possession and epileptic patients were exorcised. Moveover, according to a research by Hasan Aziz and Syed Wasim Akhtar, to this day, in most Muslim countries, epilepsy is either still viewed as a demonic possession, or, to a much greater extent, is considered contagious and people are afraid of epileptics.
Part IV: Structure/content
I plan my final product to resemble the structure and style of the documentary 'My Lobotomy', the story of Howard Dully's exploration of the procedure he underwent 44 years earlier. In the same way, along with raising awareness as to what the condition is and how it is perceived (through interviews with both medical and religious officials), I would like to tell the personal story of my friend.
My list of established contacts also includes psychologists, in order to examine the effect to which epileptic patients perceive their condition as shameful, embarrassing, or they feel they have lost the quality of their lives, or feel loneliness and general isolation. I have also contacted a performer, suffering from epilepsy, who can give me her personal account of those feelings.
I plan to include some of Nadia's writing on the subject itself, along with the stories from Nadia's mother, both read out by another person. I believe they will add the necessary amount of personal feeling to the general picture. Additionally, I have an established relationship with two music composers, who have agreed to compose music, if deemed necessary. I think this will add a nuance to the product and will turn it into a more influential and less dry piece.
Part V: Target market
The aim of this project is to raise awareness as to the perception of epilepsy in the UK, in particular, and I am producing it to hopefully be utilised during National Epilepsy Week (NEW) in the UK – 20-26 May 2012. For this reason, I have contacted epilepsy charities and organisations, so the final product will be practically-usable, which can hopefully be distributed by them and used in their campaigns for raising awareness.
Part VI: Timeline
September – November 2011 – primary research; locating library, radio and video resources; analysing collected material December 2011 – February 2012 – establishing contacts and scheduling interviews (3 interviews already scheduled); conducting interviews March – May 2012 – editing and finalising the project
Appendix I: Sources up-to-date Established contacts:
Dalal Farah Baird – Nadia's mother Dr Michael Barnett, Sydney – neurologist Dr H Allroggen, NHS University Hospitals – neurologist Sue Thurlow, Coventry University Counselling Service – clinical lead Dr. Shanika Samarasekera and Dr. Markus Reuber – NHS University Hospitals, conductors of research under the theme of 'Measuring Memory Function in Adults with Epilepsy' Stacey Rennard, Epilepsy Action – PR and campaigns manager of the charity Joanne Pybis, BACP (British Association for Counselling and Psychotherapy) – research facilitator Reverend Daniel Richards, Coventry University – Anglican Lead Chaplain Kasim Randeree, Coventry University – Muslim Chaplain Rita Marcalo, Instant Dissidence – artist and performer, author of 'Involuntary Dances' – research art project into the effects of anti-epileptic drugs
Sources of research information: PRINT: Berent, S. & Sackellares (ed.) (1996) Psychological Disturbancies in Epilepsy. Boston: Butterworth-Heinemann Cull, C. & Goldstein, H. (ed.) (1997) The Clinical Psychologist's Handbook of Epilepsy. London: Routledge Devinsky, O. (1994) A Guide to Understanding and Living with Epilepsy. Philadelphia: Davis Eco, U. (1977) Travels in Hyperreality. London: Pan Books Hopkins, A. (1981) Epilepsy: The Facts. Oxford: Oxford University Press Kellner, D. (1989) Jean Baudrillard: From Marxism to Postmodernism and Beyond. Cambridge: Polity Press Laidlaw, J. (1988) A Textbook of Epilepsy. Edinburgh: Churchill Livingstone Laidlaw, M. (1984) People with Epilepsy: How They Can Be Helped. Edinburgh: Churchill Livingstone LaPlante, E. (2000) Seized. New York: iUniverse Lyotard, J. (1984) The Post-Modern Condition: A Report on Knowledge. Manchester: Manchester University Press Noelle-Neumann, E. (1993) Spiral of Silence. Chicago: The University of Chicago Press Richard, A. & Reiter, J. (1995) Epilepsy – A New Approach. New York: Walker & Company Schachter, S. & Schomer, D. (ed.) (1997) The Comprehensive Evaluation and Treatment of Epilepsy: A Practical Guide. London: Academic Schachter, S. (2007) The Brainstorm Series. New York: Lippincott Williams & Wilkins Weiner, W. (ed.) (2010) Neurology for the Non-Neurologist. Philadelphia: Lippincott Williams & Wilkins Wilner, A. (2008) Epilepsy: 199 Answers. New York: Demos Medical Publishing
RADIO:
FILM: National Society for Epilepsy (1994) Epileptic Seizures. [DVD] Chalfont St Peter: National Society for Epilepsy National Society for Epilepsy (2006) Many Lives: Managing the Epilepsies. [DVD] Chalfont St Peter: National Society for Epilepsy
ONLINE: Epilepsy Research UK (2008) Epilepsy Research UK – Epilepsy Information – Epilepsy News – Epilepsy Research – Epilepsy Resources [online] available from <http://www.epilepsyresearch.co.uk> Epilepsy Therapy Project (2012) Epilepsy and Seizure Information for Patients and Health Professionals [online] available from <http://www.epilepsy.com> NHS (2012) National Institute for Health and Clinical Excellence [online] available from <http://www.nice.org.uk> Labels: 307mc |
