Breaking the Silence About Epilepsy

8/11/2019 Breaking the Silence About Epilepsy

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Epilepsy

Breaking the Silence

Tiffany Webb,Yahoo! Contributor Network

Jun 7, 2011 "Share your voice on Yahoo! websites.Start Here."

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''The history ofepilepsycan be summarized as 4000 years of ignorance, superstition and stigma,

followed by 100 years of knowledge, superstition and stigma" (Kale). In most underdeveloped

countries, having epilepsy means that you possess evil spirits. There are ideas on how to get rid of

these spirits, though. Chinese folklore remedies suggest that one drink a young girl's urine (Press).

The international press has reported women with Epilepsy being ritually beaten in other

underdeveloped countries over the last decade, also (Press). Even in Michigan, just in 2006 '" while

having a seizure, a man was shocked with a taser gun; beaten; and detained for "disorderly

conduct" (Epilepsy USA). He stayed at the detention facility for three weeks before the state

forced him to plead not guilty by reason of insanity to be released (Epilepsy USA). Another girl '"

only fourteen years of age '" was buried alive in Kenya, by her parents (O'Donnell). They thought

she was possessed by evil spirits and could not deal with having her around while having seizures.

These counts of abuse and neglect reflect the need for immediate attention and change. The lack

of Epilepsy education creates a vulnerable situation for people that need direct care when a

seizure occurs. Coming from someone with Epilepsy, it does not make anyone feel safe while these

events above continue to happen. There is a need for awareness, education, and appropriate

treatment.

In the past, you may recall other mistreatments that were commonly known as witch hunts.

People with Epilepsy were often thought to be demonic, and were killed because of these evil

spirits during the Salem Witch Trials (UMKC School of Law). These thoughts and accusations were

common in the 1400's on through Salem's events, and the perceptions of seizures have not
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changed much (Wissler). Without counteracting this problem, more major human rights violations

will continue.

Education is the major factor to the abusive treatments that people with Epilepsy have endured.

According to an article on Science Direct, there are two ways to counteract the stigma surroundingEpilepsy: education and resources (Hanneke M. de Boer). Education can teach others to realize it is

a medical condition '" opposed to a social condition, or of a supernatural nature. By educating

others with scientific evidence, the reality of the condition will be revealed simply as a

neurological issue.

Resources will provide treatment, but will also serve as reputable foundations that provide

validation to Epilepsy as a medical issue. Legislation is a resource for one's rights, because the law

tends to the law. People with Epilepsy were not allowed to be married in America until 1956, and

the last state to repeal the law forbidding marriage into Epilepsy did so in 1980 (Hanneke M. de

Boer). It is imperative that the government and other community service workers get on board thetrain of change, for equal rights.

Considering that Epilepsy is just as common and fatal as breast cancer, it is strange that it goes

overlooked and its research underfunded. Comparatively speaking, Epilepsy is not being treated

fairly with its similar statistics and troubling conditions. Jon Meacham of Newsweek stated in an

article last year, " -- public and private funding for research lag far behind other neurological

afflictions, at $35 a patient (compared, for instance, with $129 for Alzheimer's and $280 for

multiple sclerosis)" (Meacham).

Funding is definitely another factor to the lack of Epilepsy education, as noted. Without the ability

to research the condition, there will still be unrealistic beliefs about the nature of Epilepsy and

abuse will ensue.

From a biblical perspective, there are scriptures that refer to a seizure as a demonic possession.

Many people use this as reason to overlook Epilepsy as a medical condition. Jesus healed a boy

that " -- fell down and foamed at the mouth -- ." by casting the demon or spirit out of him.

Certainly, this had an impact on the fear of "possessed witches" as it originated in Europe. With

the Bible being used as the primary source for guidance on everything, people misinterpreted the

scripture over the years and refuse to let their ideals go. They have understood it as Jesus rebuking

the occurrence of the seizure, and they did likewise.

Having seizures can have an emotional effect on a person, especially considering the fact that a

person with Epilepsy is dependent on others when unconscious. Most seizures result in loss of

consciousness, which does not allow the person to advise others during the crisis. When the

person wakes up from the seizure, he or she may have many disorienting questions or emotions


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that need to be addressed. This makes people with Epilepsy dependent on others to take care of

them in such a situation, making it even more important to secure legislation and awareness. Law

should require that community care givers and service workers are informed on how to care for

one having a seizure since they directly encounter the public on a daily basis. It is our fellow dutyas family, friends, or neighbors to do so.

Since 1-2% of the population has Epilepsy, some people may still think there is no need to know

about the condition if you do not know someone who has it. This is incorrect, and you will

understand why as you read on.

There is a popular saying that explains the most important reason to create change and awareness

in the field of Epilepsy. Martin Niemller once said, " -- they came for the communists and I did

not speak out, because I was not a communist; then they came for the socialists and I did not

speak out, because I was not a socialist; then they came for the trade unionists and I did not speakout, because I was not a trade unionist; then they came for the Jews and I did not speak out,

because I was not a Jew; then they came for me '" and there was no one left to speak out for me"

(Marcuse). Who will help you in your time of need? Just like Niemller points out, if you do not

participate in community affairs and the well-being of your fellow humankind, then society will not

participate in your personal well-being either. Each and every person can create social reform and

change as needed. It is each and every person's duty to do so, as a member of society. The entire

reason for civilization is to compromise and socialize to gain mutually beneficial opportunities and

circumstances. By simply sharing information with one more person about Epilepsy, one

contributes to the solution.

Most importantly, our government bodies must remain involved to stop future mistreatments and

rights restrictions. Just in 2008, an amending law (S. 3406) was passed, allowing Epilepsy to be

reconsidered under the American Disabilities Act (ADA) and securing protection in the workplace.

(The Epilepsy Foundation) While the ADA was passed in 1990, the Supreme Court declared only a

few years later that Epilepsy was not a hindrance to people's rights or working conditions (The

Epilepsy Foundation). Why did the court make this judgment? The answer to this question always

comes back to the lack of education, and not seeing an 'Epileptic' as a person. With legislators

and policy makers in favor of appropriate medical procedures, they will also understand where

one's rights may be affected with this condition. The dependency between one with Epilepsy and

their care giver can allow for perilous situations.

Constructive change will naturally occur with Epilepsy outreach programs. The significance of

education will surface, and others will find more reasons to act on this predicament. People will

not feel helpless or scared when a seizure occurs, and people with Epilepsy will not feel helpless or

scared when they wake up from a seizure. With more awareness, people with Epilepsy will feel


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safer knowing that they will be treated appropriately during a seizure. As others learn more about

the condition, they will feel accomplished knowing they can handle a seizure at anytime. They will

want to become involved more in outreach, as well as in their own afflictions. Contributing to

society is rewarding and encouraging. As they become educated, they will hopefully becomeinterested in researching for a cure! There are few that study Epilepsy specifically. Since only 2/3

of the Epilepsy population encounter results when taking medication, there is another one third

left that needs a more viable solution. (The Epilepsy Foundation)

Unfortunately, there are a few obstacles to overcome before we can get through to others

efficiently. As mentioned before, 1-2% of the population has Epilepsy. We are limited on

advocates, and this poses a problem when trying to create global awareness. Some people do not

find much benefit in learning about a condition that may never affect them, and they perceive

Epilepsy with little probability of occurrence. Routine dominates many people's lives, and some

prefer not to be interrupted.

By staying determined, we can utilize all forms of media to connect globally and teach others

about misunderstanding Epilepsy. People with Epilepsy will one day speak openly without

worrying about being rejected or ridiculed. They must speak to friends, family, and neighbors

openly about the condition to expose the reality of Epilepsy. Internet and face to face encounters

offer the best support for influencing others, and remain accessible with each passing moment.

The time for change is now. The time to let go of fear is now.

Works Cited

Epilepsy USA. "Epilepsy Foundation - Michigan Man Arrested During Seizure." 29 September 2006.

Epilepsy Foundation. 27 July 2010 .

Hanneke M. de Boer, Marco Mula, Josemir W. Sander. "Epilepsy and Behavior." 4 February 2008.

Elsevier. 6 August 2010 .

Marcuse, Harold. Niemoller Quotation Page. 20 May 2010. 7 August 2010 .

Meacham, Jon. Newsweek. 11 April 2009. 27 July 2010 .

O'Donnell, Frank. Blind Hope - Scotsman.com News. 8 October 2004. 7 August 2010 .

Press, Anna. "Epilepsy Ontario: Epilepsy in Third World Countries." 30 June 2006. Epilepsy Ontario.


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27 July 2010 .

Kale, R. "Bringing epilepsy out of the shadows. ." Br Med J (1997): 315:2-3.

The Epilepsy Foundation. Epilepsy Foundation. 7 August 2010 .

UMKC School of Law. Salem Witch Trials. 2003. 7 8 2010 .

Wissler, Bernice. Epilepsy.com. 15 September 2003. 27 July 2010 .

Published byTiffany Webb

Tiffany Webb is the producer of The Sacred Disease, a documentary film about epilepsy. As a

person living with epilepsy, her mission is to create awareness and education through this film,

which is to be rel... View profile

The Salem Witch TrialsAn examination of the puritan philosophy and worldview, and the

ways in which these contributed to the Salem Witch Trials.
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Breaking the Silence About Epilepsy