How to Help People with Epilepsy, a Condition that Affects 1 in 26

Most of the time, epilepsy is an invisible disability.  That is, until it strikes unexpectedly.  Epilepsy is a disease of the brain characterized by seizures, uncontrolled and involuntary spasms.  This condition lurks in more than 2 million children and adults in the U.S., 1 in 26 people.

November is National Epilepsy Awareness Month.  The Epilepsy Foundation has a twofold aim:

  • Raise awareness of epilepsy, that people with the condition have special needs and need the understanding of the public. At the same time, people with epilepsy can and do lead ordinary and extraordinary lives.
  • With this year’s theme of #AimForZero, educate people with epilepsy on the four steps to prevent sudden unexpected death from epilepsy, with its significantly higher mortality rate:
    → Taking medication as prescribed
    → Getting enough sleep
    → Limiting alcohol consumption
    → Striving to stop seizures.

 

It is important to distinguish between epilepsy and a seizure.  When someone has had more than one unexplained seizure (e.g., not due to head trauma), “the underlying and enduring tendency to have seizures,” that person is considered to have epilepsy.

According to the Centers for Disease Control and Prevention (CDC), there many types of seizures, ranging from a temporary state of confusion to a series of convulsions serious enough to cause the person to fall, shake, and become unaware of what is happening.  These many seizures, however, fall into two primary groups:

Generalized seizures.  These seizures affect both sides of the brain.  The two main subtypes are:
* Absence, or petit mal, seizures, which appear as rapid blinking or briefly staring into space.
* Tonic-clonic, or grand mal, seizures, which can cause a person to fall to the ground, go into convulsions, cry out, or lose consciousness.  (Tonic describes muscles that become stiff; clonic refers to periods of shaking of parts of the body.)

Focal seizures.  Also called partial seizures, these spasms are located in a single area of the brain.  The three main subtypes are:
* Simple focal seizures, which can lead to twitching or a change in one’s sense of taste or smell.
* Complex focal seizures, which are severe enough to cause a person become confused or dazed; he or she will be unable to answer questions for as long as several minutes.
* Secondary generalized seizures, in which the person first has a focal seizure followed by a generalized seizure.

 

Know What to Do
Although epilepsy affects 1 in 26 people, about 1 out of 10 people has had a seizure.  Therefore, it is very important to know what to do, especially in the case of a tonic-clonic seizure:
Keep calm.  Ease the person to the floor to prevent injury from a fall.

  • Place something soft and flat (e.g., a folded shirt or jacket) under the person’s head to avoid injury and keep it inclined. This also ensures that he or she won’t choke on saliva
  • Turn the person gently onto one side to help him or her breathe and further prevent choking.
  • Clear the surrounding area of anything hard or sharp to avert possible injury.
  • In a crowded space, ask any onlookers to leave the area.
  • Remove eyeglasses or sharp jewelry; loosen ties or anything around the neck.
  • Time the seizure. Call 911 if the seizure lasts longer than five minutes.

 

In addition to response, offering care and comfort is critical and applies to any type of seizure.

Follow these general steps:

  • Remain with the person until he or she is fully aware.
  • Help the person sit in a safe place. Briefly explain what happened.  Reassure the person and help everyone keep calm.
  • In a crowded place, ask any onlookers to leave the area.
  • Check for a medical-alert bracelet for important medical information.
  • Do not hold the person down; doing so could hurt you or the person. Likewise do not put anything in the person’s mouth.

 

 

People with Epilepsy Speak Up
To spread awareness of epilepsy, famous people with the condition have decided to “Talk About It!”

In our home state, New Jersey, Jessica Keenan Smith has created an advocacy group and website, Living Well with Epilepsy , to raise awareness of epilepsy and, through guest wrtiers, “what it means to have seizures.”  She is also promoting the Epilepsy Blog Relay for the month of March 2015, with the theme as “EPILEPSY AWARENESS: Maximizing Collaboration, Eliminating Stigma,” by having guest bloggers comment on four sub-themes:

  • Epilepsy in everyday life
  • Tech and innovation in epilepsy
  • Epilepsy and families: awareness matters
  • Creativity and epilepsy.

By becoming knowledgeable about both first aid and the condition itself, we can be true disability advocates.

 

 

 

Did You Know?

About 1 in 26 persons in the U.S. will develop epilepsy sometime in his or her lifetime, that is 2.2 million Americans and 50 million people worldwide.  That figure is greater than the number of people with autism, Parkinson’s disease, multiple sclerosis, and cerebral palsy combined.  Equally perplexing, 70 percent of cases of epilepsy have no know cause 70 percent of cases of epilepsy have no know cause.

Descriptions of epilepsy are as old as writing itself.  The ancient Greeks called epilepsy the Sacred Disease, in the belief that the condition was, on one hand, a form of spiritual possession and, on the other, a sign of genius and the divine.  The famous physician Hippocrates rejected this notion, citing heredity as the cause.

The terms grand mal and petit mal have been used for many years, even among physicians.  However, as they are French for “large evil” and “small evil,” they are becoming unpopular among people with epilepsy.

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A New Disability Advocate: The Ford Foundation

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Mature aged man with a disability operating touchscreen computer

Darren Walker, President of the Ford Foundation makes a public effort to include people with disabilities.  He explained his organization’s initiative on the foundation’s blog in an open letter, titled Ignorance Is the Enemy: On the Power of Our Privelege and the Privilege of Our Power.   He cited the efforts of James Baldwin in the 1960s and 1970s and the Black Lives Matter movement of today as important forces in “confronting power, privilege, and ignorance.”  By privilege, Mr. Walker speaks of unearned advantages or preferential treatment one group holds over another.  And ignorance, he says, is such a ferocious enemy because of its conspiratorial silence.  As an African American gay man, Mr. Walker pledged his organization would focus on combating inequality.  At that time, leading disability advocates took Mr. Walker to task for overlooking a major constituency:  people with disabilities.  In this open letter, he acknowledges his error of omission with candor and has pledged to rectify it.  In his powerful and honest letter, he cites specific instances in which people of disabilities have faced all kinds of discrimination; in this context, he pledges to move “from ignorance to enlightenment.”

Carol Glazer, of the National Institute on Disability, was one of the first disability advocates to speak out in praise of Mr. Walker, in her blog post, “Ford Foundation’s Remarkable Mea Culpa Will Provide Greater Opportunities for People with Disabilities.”  The piece was published by Huffpost Business Mr. Walker, she says, has shown a profound leadership that should guide other philanthropic organizations.

Dr. Catherine Kudlick, of the Paul K. Longmore Institute on Disability, an important academic advocacy organization, acknowledged this important development but added that while it is an important start, more needs to be done.   She has three suggestions, which we quote:

  • Know that the best way to help people with disabilities is to find ways for disabled people to help you.  That means, says Dr. Kudlick, embracing the philosophy of “Nothing about us without us!”
  • Ask what it means to cure disability.   While alleviating physical or emotional suffering is important, says Dr. Kudlick, all too often the talk of a cure entails – even unintentionally – denying the disability rather than changing people’s attitudes.  Moreover, she says, it does not have to be an either/or.
  • Learn our history.  Doing so offers critical insight into important issues, such as discrimination.

Having said that, Dr. Kudlick is very pleased and optimistic about this development.  As an advocacy organization, so is the Advancing Opportunities team.

 

 

 

The US Paralympic Team Is Doing Very Well… Yes, Without the Disability Label

streetsceneThe late comedian Stella Young coined the phrase “inspiration porn” to describe the act of calling people inspirational solely because of their disability. The US Paralympic team, with 22 gold medals to its credit so far, is doing quite well without the disability label.

This fine piece by the Ruderman Family Foundation offers a good perspective.  And an earlier piece on Salon covered inspiration porn in sports.  Positive sports images of disabled athletes that do not focus on the subject’s disability “normalize” disability, as a form of inclusion.  Longtime disability advocate Andrew Pulrang had three criteria, among them focusing on the good deeds of able-bodied people rather than on the abilities of the disabled person.  Another way of determining whether an article or image is inspiration porn is whether its meaning would change if one left out the disability.

Inspiration porn disrespects full inclusion and everything we as an agency stand for.

Our Most Notable and Favorite Disability Articles for the Week Ending September 2, 2016

At Advancing Opportunities, we excel in providing residential and respite services to people of with all disabilities, along with advocacy and education services for parents and guardians and assistive technology support.  As a leader in the field, we are pleased to share our experience, knowledge, and expertise with the disability community through our social media outlets: Facebook, Google+, LinkedIn, and Pinterest.  In our Disability and Ability Highlights of the Week column, we will select the best of what we found and shared and present them.  Please click on the titles with embedded links to find the full article.

 

Please stop by our website, http://advopps.org/, and find out all we have to offer.  In addition, we are specialists in the area of assistive technology and offer a huge array of services; the Assistive Technology Center is New Jersey’s premier source of information and equipment.

Fosterfield's Hay Rake

With summer almost over, this hay rake will soon be put to use to gather hay to feed the animals for the winter. This is one of many agricultural implements on displayed – and actually used – at Fosterfield’s Farm. Fosterfield’s is a living historic farm in Morristown, NJ, accurately re-creating 19th century farming. Photo: Daniel L. Berek

 

 

Advancing Opportunities job announcement of the week:

Advancing Opportunities is hiring caring and committed residential services pros!  If you live in central New Jersey and are interested, please stop by our open house on September 7, 10 a.m. to 2 p.m.  You can also apply online.

 

 

Special education (including college for students with disability):

Learning Ally launches program for blind and visually impaired students.

Tips for children with dyslexia, from a dyslexic author.

Most children who learn more than one language gain valuable skills, and researchers say this may also be true for children with autism.

 

 

Informative, positive, noteworthy (or all three!):

Inspired by a desire to help her grandmother with Alzheimer’s remember important family days, a teen creates a “timeless” app.

 

 

 Advocacy and self-advocacy:

A blind 25-year-old woman is starting Harvard Law School to make a difference for others: “I had to advocate for myself every day.”

ACI, the New Jersey Alliance Center for Independence offers workshops to encourage people with disabilities to learn about the issues, self-advocate, and vote.

 

 

Assistive technology:

A talented young engineer creates affordable and versatile assistive technology device to help paralyzed people take a sip.

 

 

People with a disability in the arts:

A supremely talented artist and photographer born with severe birth defects creates masterpieces… with her feet.

A young photographer uses his creative photography to document and cope with his depression.

 

 

 Disability awareness and appreciation:

“Disabled people don’t exist to make non-disabled people feel better.”

A ten-year-old autistic boy writes a poem about how he feels; his teacher and parents are astounded.

 

 

Beauty, fashion, glamour people with a disability:

 Fashion designers who create clothes for people with disabilities are profiled.

An orphan girl with Down syndrome is now a fashion model for a major store.

 

 

Medical news – research:

Researchers have charted the human cerebral cortex in unprecedented detail, adding to what is known about the brain’s bumpy outer layer.

 

 

 Employment for people with disabilities:

A new report shows continuing gains in employment among people with disabilities.

“What Disability Means”: A New York Times Series of Essays

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“What Disability Means” is first follow up survey in a new New York Times series called “Becoming Disabled,” with an essay on disability, pride, and identity.  The “What Disability Means is a collection of public comments submitted directly on the online Web page, as well as a dedicated forum on Facebook.

Actors and Actresses with Disabilities Finally Start to Get Their Due

Several recent and forthcoming films and television programs will be featuring people with disabilities, also enhancing public awareness of these diverse conditions.  This news is noteworthy, as the TV and film industry has come under criticism for hiring non-disabled actors to play the parts of people with actual disabilities.  Last month, a white paper published by the Ruderman Family Foundation found that nearly all roles of people with a disability are played by non-disabled actors.

 

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Two noteworthy television shows and a movie are coming this fall:

In addition, Megan Bomgaars, star of Born this Way, has gained international recognition. By the way, the talented young woman has Down syndrome.

 

And let us remember the “good guys,” namely the charming new autistic character Julia from Sesame Street and the film Finding Dory, which has earned wide acclaim among reviewers and the American Autism Association.

 

Autism Headlines – Autism Can Be An Asset In The Workplace — Anonymously Autistic

There are more and more stories about autism popping up in thew news, especially at the conclusion of Autism Awareness month. I enjoyed the article below, originally written by Yuki Noguchi for NPR. As the population of people diagnosed with autism spectrum disorder keeps growing, so does the number of people with that diagnosis who aren’t finding […]

via Autism Headlines – Autism Can Be An Asset In The Workplace — Anonymously Autistic