Oppression of Neurological Disorders
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Transcript of Oppression of Neurological Disorders
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 ! [email protected] ! 801-935-7329