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If Not Us, Then Who?

The Transformative Powers of Art in Epilepsy

Those whose lives are affected by epilepsy have had their voices stifled by ignorance, prejudice, and stigma since the beginning of time. Hidden Truths Project (HTP) was established to encourage and empower individuals affected by this condition, to allow them to express their experiences through art in order to provide a narrative to raise awareness and educate the public regarding epilepsy.

Those whose lives are affected by epilepsy have had their voices stifled by ignorance, 
prejudice, and stigma since the beginning of time. Hidden Truths Project (HTP) was 
established to encourage and empower individuals afflicted by this condition, to provide through a creative narrative their lived  experiences to raise awareness and educate the public the truths of epilepsy.  

HTP has had the extreme fortune of working with two artists/filmmakers, who have used this medium to depict their seizure experiences. In the line-up we have included, Miles Levin and Ingrid Pfau’s films as part of Hidden Truths Project four-part series, If Not Us, Then Who? The Transformative Powers of Art in Epilepsy. The four-part series took us on an exciting journey through these two films written and directed by people living with epilepsy, sharing their unique stories, with additional comments from speakers in the film industry and experts in the field.  The series also explored the misperceptions of epilepsy which  still exist today along with the health care disparities in treatment of epilepsy.

Despite the many scientific advances in the medical community’s understanding of epilepsy, there has been little progress in the public perception.  Two parallel worlds exist: science with its advanced understanding in pathophysiology, diagnostics, and treatment, and THE DARKER WORLD OF SUPERSTITION & PREJUDICE!

 “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”.   R. Kale; Neurologist in BMJ

Film, television, the internet, and other social media platforms have not only become a major source of entertainment, but more importantly a go-to source for health-related information. The information can be quickly accessed, and anyone can have a voice, with little to no censorship or factual based filtering.

Approximately 85% of respondents sought medical information from using search engines. Out of these 72.8% searched for information through social media.  Most 72.2% searched for themselves and 52.4 % for family members.”  National Library of Medicine: Saudi Med J. 2019 Dec; 40(12): 1294–1298.

 

To date, there has been little input by the medical community or engagement of people with epilepsy, to help drive this narrative in the film industry.  Epilepsy in film is usually portrayed  for its dramatic effect: sensationalized, distorted, and frightening. For many attending the cinema, this may be their first and only exposure to a seizure. When inaccurately presented (as is often the case) the viewer can walk away with a warped view of this condition, perpetuating negative stereotypes.

Rarely in film have some of the more disabling issues of epilepsy been addressed: the psychosocial issues, stigma, discrimination, isolation, fear, underemployment, socio-economic hardship, drug side effects, and loss of independence. Things that are more disabling than the actual seizure experience itself.

Dr. Sallie Baxendale’s, Epilepsy at the Movies is a fascinating read for those interested in film and epilepsy. She presents a historical review of epilepsy, seizures, and non-epileptic attack disorders in 62 films over 75 years. Examples of the historical falsehoods include “demonic or divine possession, genius, lunacy, and general ‘otherness’… with a progressive trend towards more overt depictions of epilepsy”. Gender bias was also prevalent in many of these films. “Male characters with idiopathic epilepsy tend to be mad, bad, and commonly dangerous, whereas characters with post-traumatic epilepsy are usually cast as heroes triumphing against the odds. Epilepsy in female characters tends to signify exotic vulnerability”. Due to the visual nature of film, generalized tonic-clonic seizures are the most common seizure type depicted.

With film and television the primary visual sources of entertainment presented to the public., these two platforms have played an enormous role in affecting public perception and opinions. With a condition like epilepsy, marred by a history of myths and falsehoods, it is imperative to present epilepsy for what it is, and break this cycle of misinformation.

“Epilepsy, like sex and death, must be made speakable … It is only then that we can begin to banish the ghosts that have for so long made it mysterious and threatening.”
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