The Community History of: Epilepsy

Today we’re having a history lesson. I’m super passionate about the history of my people in all aspects, even if it hasn’t been very well recorded over the years due to the shame the abled world has pushed onto us.

 

The point of this history lesson is to stop people from laughing at the expense of those with epilepsy.

 

Epilepsy has been affecting people at least since the beginning of recorded history.

 

Ancient history believed epilepsy to be a spiritual condition.

The world’s oldest description of an epileptic seizure from the language use by ancient Mesopotamia, Akkadian, text and was written around 2000 B.C. The person described in the text was diagnosed as being under the influence of a moon God and underwent an exorcism.

 

Ancient Greeks saw epilepsy as a form of spiritual possession also but associated it with genius and divine instead. Epilepsy appears throughout Greek Mythology and is also commonly associated with the moon.

 

Ancient Rome didn’t share pottery with people with epilepsy in an attempt to avoid catching epilepsy. People would also spit on the chests of people with epilepsy to avoid being affected as they believed epilepsy was contagious.

 

In 1780 B.C., The Code of Hammurabi lists that slaves may be returned for if the slave were to have seizures in the first three months of ownership. The code also dictates that a person with epilepsy couldn’t marry or testify in court.

 

During the fifth century B.C. of classical Greek a physician, Hippocrates, rejected the idea of epilepsy being a spiritual related disease. He proposed that epilepsy was not divine but a medically treatable problem. Instead of referring to it as the ‘sacred disease’, as was common practice at the time, he decided to call it the ‘great disease’ instead. This decision gave rise to the modern but now outdated term ‘grand mal’ for tonic-clonic seizures. Despite his work of great detail, his view was not accepted at the time and people continued believing epilepsy was of a spiritual, usually negative, nature.

 

Evil spirits were blamed in majority of the world until at least the 17th century.

 

In the 18th and early 19th centuries people with epilepsy were labelled as insane and locked in asylums with incredibly poor treatment. Around 1825 Jean-Martin Charcot found people with epilepsy side by side with the criminally insane in Pitié-Salpêtrière University Hospital, the birthplace of modern neurology. Until the late 1800’s, people with epilepsy were often incarcerated as ‘criminally insane’ despite some stigma easing in Europe and North America due to beliefs shifting from psychiatry to neurology.

 

In 1956, 18 US states provided for the sterilisation of people with epilepsy on eugenic grounds.

 

Organisations like Epilepsy Queensland Inc. were only founded in 1969. The Kemp family were inspired to found EQI due to their son with epilepsy being fired repeatedly on discriminatory grounds. This discrimination was commonplace with no anti-discrimination laws in place.

 

Until the 1970’s it was still legal in the United States to deny people with epilepsy entry to public places such as restaurants, theatres, recreational centres, etc.

 

In the United Kingdom, a law prohibiting people with epilepsy from marrying at all was repealed in 1970.

Before 1971 in the UK, epilepsy was grounds for marriage annulment despite the common vow “in sickness and in health”. To this day in India and China, epilepsy can justify denial of marriage and it primarily targets women in a further act of discrimination.

People with epilepsy in the United States were forbidden to marry in 17 states until 1980.

 

In a 1987 ruling, the United States Supreme Court ruled that “a review of the history of epilepsy provides a salient example that fear, rather than the handicap itself, is the major impetus for discrimination against the people with handicaps.”

 

As late as the second half of the 20th century, in Tanzania and parts of Africa, epilepsy was associated with possession by evil spirits, witchcraft, or poisoning and was believed to be contagious.

 

Today stigma can interfere with timely access to healthcare, early diagnosis, which is extremely important, and treatment.

The negative perceptions of epilepsy among medical professionals and structural discrimination resulting from stigma can impair the service utilization, particularly when there is scarcity of resources for treatment, rehabilitation and research.

In south India, for instance, parents of children with epilepsy tended to isolate themselves from others in their social network.

Around the world a young child with epilepsy may be refused continued access to education because social attitudes in educational institutions are prejudicial and discriminatory. I personally was denied access to continued education during my time in hospital and home care while in high school.

 

While some countries have laws in place where people with epilepsy can obtain a licence after a certain period, typically a year, of being seizure free, people of India simply can’t get a licence.

 

Insurance cover to people with epilepsy in India are issued at disadvantageous rate and are denied benefits in the event of accidents and/or death occurring due to epilepsy.

 

People with epilepsy find it harder to find a stable job as uneducated employers will often find a way around anti-discrimination laws that may be in place, some countries don’t even have these laws, to not employ the potential worker who is fully qualified for the job. If they find a job they may be refused advancement in their role or be treated differently by their employer and peers for having epilepsy.

 

Another obstacle faced worldwide, especially in rural areas, is lack of access to comprehensive epilepsy centres. In 2017 somebody presenting to a rural area hospital was left by doctors and nurses to experience seizures a publicly accessible space outside of the hospital because they believed she was faking for attention when, in reality, they were not accurately educated.

In this same rural area I was personally told that I shouldn’t be an activist because people with epilepsy live perfectly fine lives, so there was no need for what I do.

 

Todays media is just as harmful as the real world.

 

While Grey’s Anatomy is a progressive show that educates as its team learns, in 2005 the show used terms like “fish out of water” to describe somebody having a seizure. This is harmful and hurtful language that is dangerous to use in major mainstream media in modern times.

 

Even more recently a study of Twitter with authors from Dalhousie University in Canada found that of 10,662 tweets containing the word “seizure” collected during a single week in April of 2011, 41% were considered to be derogatory in nature.

 

People still video people having seizures unpermitted to mock the people being recorded. People with epilepsy are constantly the butt of generic, offensive, overly used jokes that have stuck around years upon years.

 

In 2019 after actor, dancer and philanthropist Cameron Boyce died, people acknowledged his death by posting videos of them poorly imitating seizures as the #CameronBoyceChallenge.

 

In 2020 the #SeizureChallenge rose to fame in mainstream media when people used social media platform TikTok to post videos of themselves faking seizures. In the background of the majority of these videos was a song from musician Juice Wrld who died after a seizure that was brought on from drug use. His death made headlines worldwide and this was people’s way of acknowledging that during their already offensive ‘challenge’.

 

Negative stereotypes of people with epilepsy have been so ingrained into society that many with epilepsy accept them. We also sit by silently when things like these TikTok videos arise. I hope by speaking about our own experiences and taking ownership and pride of our history we can change these habits and feel empowered to make change, even if the only change we make is amongst our friends and family.

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