Epilepsy: Comments on Experiences of Adria Gross
Author: Thomas C. Weiss : Contact: disabled-world.com
Published: 2009-12-26 : (Rev. 2018-04-01)
Synopsis and Key Points:
Medical and police personnel continue to use restraints and handcuffs on persons with epilepsy.
In an article about Adria Goldman Gross, presented by recordonline.com, information about the situations one woman has faced in relation to her experience with epilepsy as well as epilepsy itself are very well portrayed. As a person who also has epilepsy, I was greatly interested in how the article would present a person who has this particular form of disability. Some of the situations that Adria faced, it turns out, were ones that I have as well.
Adria describes a situation where she was shopping at Lord & Taylor's Department store in Manhattan, where she experienced a gran mal seizure.
She said, "I was conscious, but I couldn't speak. I lay on the floor convulsing while a crowd gathered to gawk at me in the aisle where I had fallen." The police were called - they handcuffed her and took her to a hospital. Several hours later, Adria regained the ability to speak. A nurse insisted that the police remove the handcuffs and they finally let her go home.
I have had many more than just one gran mal seizure over the years.
More than once I have found myself either in restraints, or yes - even in handcuffs. The use of handcuffs was rare, as was police involvement. Unlike Adria, when I experience a gran mal seizure I am completely unconscious. I have to wonder why some medical personnel believe that restraints are helpful when in fact I have found myself with bruises on my wrists and ankles upon regaining consciousness because of them. I also have to wonder why the police have even been involved at other times.
The article mentions that situations like these are not unusual for people with epilepsy to face.
It also mentions some important facts about epilepsy, such as the fact that epilepsy is not a form of mental illness, nor does it cause mental illness. Neither is epilepsy an indicator of intelligence. I am left to wonder why, then, do medical and police personnel continue to use restraints and handcuffs on persons with epilepsy? Adria herself has hinted at one potential reason why - fear. She says, "You may well imagine what it was like to have these seizures in school. My thoughtless classmates got frightened whenever they saw one of my attacks. I was ostracized and had to learn to deal with rejection."
How many times did I have some form of seizure while in class, or while on campus?
Not only have I experienced gran mal seizures, but forms of petit mal seizures as well. Responses from fellow classmates have varied, depending upon their particular personalities, yet a gran mal seizure always seemed to bring the, 'bar fly,' response, or crowd gathering, that Adria has described. Even when firefighters or Emergency personnel have asked people to leave, these bar flies have continued to stand around, gawking. Years of horror movies, produced through Hollywood, could be partially responsible for such a reaction from people who might otherwise be considered socially responsible. For people who experience a seizure, the crowd response is oftentimes embarrassing.
Adria stated that as she grew older she attempted to hide her disability because of the embarrassment it caused her.
Embarrassment is caused by the presence of another person and the perceptions of everyone involved. What I am saying is that the embarrassment Adria, myself, and potentially others with epilepsy experience as a result of this crowd response is caused by stigma. "You are different, you are not like us, you are frightening." People with epilepsy may very well know of what I speak.
Reaching for treatment was another matter for Adria, something else I have experience with.
She was prescribed dilanthum and phenobarbital, followed by eighteen other forms of medications. For Adria, these medications did not work. Instead, they affected her behavior, making it erratic and unpredictable - causing her even more embarrassment. At one point, her medications found her unable to do her job at a manufacturing plant. Adria was fired; she had to fight to get disability coverage. She said, "It's against the law for an employer or a school to discriminate against a person with any disability, even mine. However, some employers may find other ways to get rid of you because they know that the law is on the side of the disabled person."
Personally, I was prescribed Dilantin; Tegretol was added later when it did not work.
Both of these medications ended up failing, and a list of medications has followed over the years. Yes, they have had a certain effect on my behavior at points, finding my family members and friends, 'abandoning ship,' along the way. Compassion for the family member with a disability only seems to extend so far as the family member with that disability is well-behaved, apparently. Employers have been another matter entirely. As nearly any person with a disability in America can tell you, if an employer wants to get rid of you badly enough, they will find a way to weasel around any existing law.
Where is Adria now?
She is living an active lifestyle in Monroe. Adria is married, has two children, and is the owner and President of her own Insurance business - Med/Wise Billing Inc. She is an advocate for people with all types of disabilities, particularly persons with epilepsy. As for me, I write for Disabled-World.com, and am in the process of building AbilityCorner.com. I am married to Wendy, a woman with more than a dozen years experience as a Medical-Surgical Nurse, and I continue to write about fellow people with disabilities.
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