THE OPPRESSION OF EPILEPSY & OTHER NEUROLOGICAL DISORDERS

Holly E. Ferrin Oppression: The Power of Subtlety Making an IMPACT Nov 7th, 2012 UVU, Ragan Theatre

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?

! 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

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.

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)

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

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.

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.

• 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

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.

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

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

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

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

CONSIDER THIS…

Until those who are oppressed are liberated, no one is truly free.

SOURCES

! Center for Disease Control ! Epilepsy Association of Utah ! Epilepsy Foundation of America ! Talk About It!

CONTACT

! Holly E. Ferrin !  EAU Assoc VP Programs !  holly@epilepsyut.org !  801-935-7329