1. THE OPPRESSION OF
EPILEPSY & OTHER
NEUROLOGICAL DISORDERS
Holly E. Ferrin
Oppression: The Power of Subtlety
Making an IMPACT
Nov 7th, 2012
UVU, Ragan Theatre
2. ITS ALL ABOUT PERSPECTIVE
! What if…?
! You feel misunderstood by the majority
! A situation doesn’t accommodate your needs
! You feel you don’t know how to ask for help
! You don’t know how to talk about your problem
! Haven’t we all felt like this?
3. ! What is it?
! Epilepsy: A neurological
disorder characterized by
recurring seizures.
! Neurological Disorder: The
disruption the healthy or
normal functioning in the
brain & nervous system.
! Examples:
! Angelman’s Syndrome
! Cerebral Folate Deficiency
! Dravet Syndrome
! Epilepsy*
! Lennnox Gastaut Syndrome
! Ohtahara Syndrome
! Rasmussen Syndrome
! Rett Syndrome
! Tourette Syndrome*
! West Syndrome
*not always physically obvious
EPILEPTIC NEUROLOGICAL DISORDERS
4. EPILEPTIC NEUROLOGICAL DISORDERS
! Who is affected?
! Everyone
! Everybody knows somebody with an epileptic neurological
disability (even though some kept it secret while alive).
! Recognize these names?
! Hippocrates, Kierkegaard, Caesar, Napoleon, Joan of
Arc, Van Gogh, Tchaikovsky, Beethoven, Handel,
Mohammed, Harriet Tubman, Elton John, FloJo
! The author of the Americans with Disabilities Act,
Tony Coelho, has Epilepsy.
5. WHAT IS EPILEPSY?
! Epilepsy is also known as a “seizure disorder,” which means
that the person who has Epilepsy has reoccurring seizures.
! What are seizures?
! A brief excessive discharge of electrical activity in the brain that
alters one or more of the following
! Movement
! Sensation
! Behavior
! Awareness of Environment
! Seizures, though fearfully portrayed in the media, are not
always convulsive and/or obvious to the untrained eye.
! Absance Seizures (blank staring)
! Atonic Seizures (looks like fainting)
! Complex Partial Seizures (uncontrolled twitching)
! Simple Partial Seizures (sensory stimulation)
6. STATISTICS OF EPILEPSY
! Nationwide, about 5 million Americans diagnosed
! There are more people with Epilepsy than the
combined number of those with Autism, Cerebral
Palsy, Muscular Dystrophy, Multiple Sclerosis and
Parkinson’s Disease.
! Nearly 200,000 new cases annually diagnosed
! More than 45,000 will be children
! 1 in 26 people will develop Epilepsy
! That is at least 1 student in every small classroom
! 1 in 10 people will experience a seizure
! That is at least 3 student in every small classroom
! In Utah
! Approximately 120,000 people diagnosed
! In 2010 at PCMC over 3,500 children were diagnosed.
CDC & EAU 2012
7. SUBTLE & OPPRESSIVE MISCONCEPTIONS
! The idea that looking normal indicates normal
neurological & cognitive function.
! The idea that there is only one type of seizure.
! The idea that Epilepsy is a disease and/or is
contagious.
! The idea that Epileptic persons are retarded.
8. MEDIA, EPILEPSY, AND GENERAL
NEUROLOGICAL DISABILITIES
! How are neurological disabilities commonly conveyed in
the media?
! Perpetuates
! Fear
! Misunderstanding
! Myths & Misconceptions
! Mockery
! Bullying
! The media commonly influences our behavior.
! How we react to a seizure situation in everyday life.
! The media perpetuates the stereotyped perspective, which, in
turn, affects the viewpoints of general as well as professional/
scholarly perspective.
! We are a xenophobic culture.
! We fear the unknown and the abnormal
about the humans around us.
9. • Notice the weight and
size of the different
shapes.
• The bi-directional
arrows indicate that
the cycle of influence is
neither clockwise or
counter-clockwise, but
it works both ways.
• The hexagon indicates
that there is crossover
between:
• People
influenced by
the media
• People
influenced by
scholars &
professionals
• Scholars
influenced by
media
• Media
influenced by
scholars
10. Abnormality
• Something’s wrong, so let’s fix it!
• Diagnosis leads to a label.
• The label of the neurological disability allows certain
aspects of access that the person may not have in
various socio-cultural realms.
Society’s
Labeling
• Once you have a label on someone with a neurological
disability the legal and educational professionals
enable support and access to give a sense of perceived
equality.
• Examples: SSDI, Special Education, etc.
• So what’s the problem???
Stigma &
Oppression
• Society (influenced by the media) tends to look down
on people who don’t seem normal.
• The programs that are set up by the government for
financial and educational support tend to be hard to
get out of to claim a sense of financial independence.
11. UNWILLING TO BE AWARE = OPPRESSION
! Willing to not acknowledge the vast numbers
! Willing to take in incorrect ideals about Epilepsy
! Willing to give in to fear about the unknown
! Willing to mock the Epilepsy population
! But unwilling to learn more
! Such attitudes are oppressive as well as dangerous
12. WHAT WILL POSSIBLY BREAK THROUGH
THE OPPRESSIVE FORCES?
! Talk About It!
! Epilepsy is a non-discriminate and
it is not an isolated disorder
! Why should conversation about it be isolated,
hindered, and stigmatized?
! Talking about Epilepsy (or any oppressed issue) takes
the stigma and fear out of it.
! TalkAboutIt.org
! Observing times of awareness
! the month of November & March 26th
13. WHAT WILL POSSIBLY BREAK THROUGH
THE OPPRESSIVE FORCES?
! Applications from Cultural Wealth
! Resistance Capital
! Knowledge of oppressive behaviors
! Navigational Capital
! Piloting through stigmatizing environments
! Humor
! Hard Work
! Good Attitudes
! Linguistic Capital
! Communication
! (In the context of Epilepsy & other Neurological Disorders)
Multilingualism increases cognitive development
14. WHAT WILL POSSIBLY BREAK THROUGH
THE OPPRESSIVE FORCES?
! Applications from Cultural Wealth (continued)
! Social Capital
! Human relationships
! Networks
! Support Groups
! Online Forums
! Attending events that support the Epilepsy population
! All allow bonding
! Familial Capital
! Nurturing
! Coping
! Family Tradition / Beliefs
! Aspirational Capital
! Maintain hopes and dreams – “Reach for the stars!”
! Counters socially constructed gravity
