People Who Are Different Are Special… Like You

People Who Are Different Are Special… Like You

children with disabilities

Fred Rogers, Extraordinary Friends, written in 2000.

“You are special.” That’s the comforting message from Mister Rogers. And by “special,” Fred Rogers does not mean empty praise merely to inflate egos. Each of us is unique in his or her special way. With this, it is apt that Mister Rogers would introduce readers to other children who are different from them, in that they have a disability. With his characteristic empathy, understanding, and honesty, he acknowledges that these people who look or act different can make on feel uneasy. Yet, after taking the time to get to know these people, they are also much like them: they have hobbies, favorite foods, and like to be with others. In that way, Mister Rogers neither puts these extraordinary friends on a pedestal (what many in the self-advocacy community refer to as “disability porn”), nor presents them as objects of pity. Before he starts his narrative, Rogers introduces us to six children. Three have disabilities (though he does not reveal what kind), and three do not. With each of the six children, Mister Rogers simply explains what they like to do and their favorite food. Throughout, Mister Rogers gives tips on etiquette, to ensure both parties are comfortable. In acknowledging differences as well as what we share in common, we are simply being real friends.

Although the book’s positive message merits five stars, the writing is better suited to having an adult read the book aloud to the child. The message, however, is very much geared to the child, told in Fred Rogers’s own wonderful way.

It is worth recalling that Fred Rogers’s affinity for children very much extended to those with disabilities. Quite a few of these children were guests on his show. These children never forget the kindness of Mister Rogers! One of the most beautiful moments was a very special reunion when he was inducted into the hall of fame. No more needs to be said about Fred Rogers and the reason so many people continue to adore this special man.

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The State of Learning Disabilities: A New Report

Advocacy report on learning disabilities - awareness

This report, from the National Center for Learning Disabilities, is now available for reading and can be downloaded.

The National Center for Learning Disabilities, a leading advocacy group, just came out with a report, The State of Learning Disabilities: Understanding the 1 in 5. That figure, one in five, or 20 percent, refers to the number of students who have a learning disability, such as attention deficit/hyperactivity disorder (ADHD) or dyslexia. This population is very much misunderstood; all too often, these children are (mis)labeled as lazy or unmotivated or just not as smart as their peers. More often than not, these labels are untrue. Not only are these students at risk of failing school, but also they all too often struggle finding or keeping employment and are disproportionately represented in the prison population.

Despite one in five students having some sort of learning disability, according to this report, only one in 16 receive proper special-education services with an Individualized Education Plan (IEP) and only one in 50 receive services under Section 504.  This detailed report covers the following:

  • The neuroscience, stigma, and federal laws concerning these students
  • How to identify struggling students
  • Supporting academic success
  • The social, emotional, and behavioral challenges these students face and pose
  • Issues regarding the transitioning to life after high school
  • Recommended policies.

The report provides summaries for each state, with “key data points and comparisons to national averages in several areas such as inclusion in general education classrooms, disciplinary incidents and dropout rates for students with learning and attention issues.”

The bibliographic citation for this report is:

Horowitz, S. H., Rawe, J., & Whittaker, M. C. (2017). The State of Learning Disabilities: Understanding the 1 in 5. New York: National Center for Learning Disabilities.

April: Fostering an Awareness, Appreciation, and Understanding of Autism

World Autism Awareness Day

Central to the U.N. Convention on the Rights of Persons with Disabilities (CRPD) is “respect for the inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons… and full and effective participation and inclusion in society” (Article 3). This concept is reflected in this year’s theme for World Autism Awareness Day, “Toward Autonomy and Self-Determination.”

autism_ribbon

In the U.S. and throughout the world, the rate of autism is high, affecting children and adults of all socioeconomic and ethnic groups. According to the U.N., “Appropriate support, accommodation, and acceptance of this neurological condition allow those on the spectrum to enjoy equal opportunity, and full and effective participation in society.”

On March 31, 2017, the U.N. held conference on multiple aspects of autism, Toward Autonomy and Self-Determination, which included the following:

In welcoming everyone, Cristina Gallach, U.N. Under-Secretary-General for Communications and Public Information, said “We come together to renew our commitment to raising awareness of the rights of persons with autism – to equal opportunity and full participation in society, on an equal basis, with other citizens. To achieve this inclusive society that we aspire to, we must… ensure that the fundamental rights enshrined in the CRPD are respected.” This is a right that has been recognized since the Universal Declaration of Human Rights was declared in 1948. Continued Ms. Gallach, “When [people with autism] enjoy equal opportunity for self-determination and autonomy, persons with autism will be empowered to make an even stronger positive impact on our shared future.”

U.N. Secretary-General Antonio Guterres could not be present, but he prepared a statement: “On this World Autism Awareness Day, let us play a part in changing attitudes toward persons with autism and in recognizing their rights as citizens who, like everyone else, are entitled to claim those rights and make decisions for their lives in accordance with their own will and preferences. Let us also renew our promise engraved in the 2030 Agenda for Sustainable Development to leave no one behind, and ensure that all people can contribute as active members to a peaceful and prosperous society.”

The keynote speaker, Simon Baron-Cohen, Director, Autism Research Centre, University of Cambridge, was gave an overview of the autism spectrum.

In regard to the “commitment to leave no one behind,” Jackie Pilgrim, a noted disability advocate spoke about dignity. In her work with NAMI Durham she spoke of her organization’s new 8-hour course for police and first-responders to replace the inadequate 1.5 hour course used previously, one for which they have shown “passion” to learn.

Barry Prizant, author of the landmark book Uniquely Human: A Different Way of Seeing Autism, summarized his philosophy:

Uniquely Human

  • De-pathologize autistic behavior (echolalia, stimming). It’s the way we deal with stress and self-regulate. They should not be repressed or otherwise “managed.”
  • Autism is not a tragedy, it can become one
  • Self-determination begins in early childhood. Children at an early age
  • Let’s look at ourselves.

Added Micheal John Carley. The best way to help is to examine ourselves and change the way we view people with autism.

An autism research and education organization, Autism Speaks, initiated the worldwide Light It Up Blue, campaign in its effort to raise autism awareness.    Among many in the autism community, both advocates and self-advocates, Autism Speaks is highly controversial, because that organization is seeking a cure, whereas many people prefer to see autism as simply another way of being, “different, not broken.”

 

National Autism Awareness Month

A ribbon made of multicolored puzzle pieces.  It has become one the most recognizable symbols of autism in the world.  The various colors reflect the many “faces” of autism, a condition often referred to as the autism spectrum disorder (ASD) because no two people with autism are alike.  (The cognitive abilities of people with ASD range from “nonverbal” to intellectually brilliant.)  The ribbon symbolizes solidarity and hope of a happy, fulfilling life for people with autism.  The puzzle pieces remind us that the condition and the people with it are still very much a mystery.

Autism Awareness Month first came to be some 25 years ago, when the Autism Society of America undertook an effort to promote autism awareness.  The primary objective was to “promote … inclusion and self-determination for all, and assure that each person with autism  is provided the opportunity to achieve the highest quality of life.”

 

Three short films that treat autism awareness and appreciation are worth noting:

  • “Make it Stop.” This is a brand-new awareness video to foster understanding of people with autism.
  •  “Talking in Pictures.”  This documentary dispels myths and stereotypes… at least as they apply to everyone with autism. “It’s not that we’re doing it wrong, it’s not that we’re autistic enough to fit in with the world’s idea of autism, it’s that the world’s idea of autism isn’t big enough to fit us all in!”
  • “Perfectly Normal,” is a film about Jordan, a man with Asperger’s, who discusses his everyday life, of which the New York Times publicized an important excerpt.

Furthermore, Sesame Street will debut Julia, a character with autism. This event will be covered in a later article.

 

And some noteworthy facts on autism:

  • In 2014, the U.S. Centers for Disease for Disease Control estimated the prevalence of autism as being 1 in 68 births.
  • Autism comes from the Greek autos” meaning “self.” Swiss psychiatrist Eugen Bleuler in 1910 used the New Latin term autismus to describe schizophrenic symptoms of children; US psychiatrist Leo Kanner first used the term autism in 1943.
  • Asperger’s syndrome is named after Austrian pediatrician Hans Asperger, who in 1944 first described the symptoms in children he was observing.

With a sincere effort of autism awareness, we will be able to treat this population with the dignity they deserve.

World Down Syndrome Day: Finding My Voice in My Community

Web page - March 21 is World Down Syndrome Day, 3/21 in recognition of Trisomy 21

March 21 is World Down Syndrome Day, 3/21 in recognition of Trisomy 21.

March 21. That’s Three twenty-one. These numbers are symbolic of the medical name for Down syndrome: trisomy 21. In humans, each cell normally has 23 pairs of chromosomes, which contain the person’s genetic makeup. In people with Down syndrome, the 21st chromosome has three rather than the usual two copies. The condition of there being three copies is known as trisomy; Down syndrome is the most common trisomy condition (please see our earlier blog post on Trisomy Awareness Month). Such seemingly tiny genetic variations can have a tremendous impact on a person. A prime example is the 23rd chromosome: females have two copies of the X chromosome and males have one X and one Y.

The theme for World Down Syndrome Day this year is #MyVoiceMyCommunity, “enabling people with Down syndrome to speak up, be heard, and influence government policy and action, to be fully included in the community.” In addition, Down Syndrome International will hold a conference on March 21 at the United Nations World Headquarters, New York. The conference and campaign will address four questions:

  • Why it is important for people with Down syndrome and their advocates to speak up and influence policy makers at all levels?
  • What key policies affect the lives of people with Down syndrome? How can these policies ensure full inclusion in society?
  • How can advocates become involved?
  • How can we empower people with Down syndrome, along with those supporting them, to advocate for themselves?

These are important questions we should ask of ourselves in serving our consumers with Down syndrome.

For those interested in following the World Down Syndrome Day Conference at the U.N., the event is being streamed. Information on the speakers, along with important background knowledge, is available on March 21.

Some portraits in Down syndrome

Book Lucky Few - A mom finds joy in adopting a daughter with Down syndrome

Heather Avis is a mom who, with her husband, adopted a little girl with Down Syndrome. In this book, released on WDSD, she tells of the joy she has found.

 

 

 

 

 

 

A German man with Down syndrome who survived the Holocaust is independentWalter, now 63, survived the Nazi genocide against persons with disabilities. Instead, he has found dignity in his independence in the community.

ZEIT Magazine, Nr. 37, 6. September 1996

 

 

 

Screen shot of photo essay documenting the beauty of Down syndrome

The Huffington Post recently featured a photographer who compiled a photo essay depicting the beauty of children with Down syndrome.

 

 

 

 

Charles de Gaulle adores his daughter, Anne with Down syndrome

Former Prime Minister took the time to enjoy a precious moment with his daughter, Anne, who had Down syndrome.

Trisomy: About That Extra Chromosome March Is Trisomy Awareness Month

Most of us are born with 23 pairs of chromosomes, for a total of 46. These chromosomes include DNA and other genetic building blocks. Some people, however, are born with a trisomy condition, that is, an extra chromosome. Trisomy can lead to a variety of problems, including physical and intellectual and developmental disabilities. March is Trisomy Awareness Month: the three most common trisomy conditions are as follows:

  • Trisomy 21. Most of us know this condition as Down syndrome, named after the
    down_syndrome_karyotype

    Karyotype for trisomy Down syndrome: Notice the three copies of chromosome 21. Courtesy: National Human Genome Research Institute – Human Genome Project

    British physician John, along with the familiar physical characteristics and facial features. Children with Down syndrome are at increased risk of cardiac (heart), endocrine (thyroid), gastrointestinal (digestive), auditory (hearing), and periodontal (gum) conditions. Many people who work among individuals with Down syndrome note their general happiness and positive outlook on life. However, these people may experience depression and anxiety in early adulthood and develop Alzheimer’s later in life.

  • Trisomy 18. Also known as Edwards syndrome, this is the second most common trisomy condition. Children born with Trisomy have severe intellectual disabilities that accompany microcephaly, an unusually small head (along with a small lower jaw). Many other internal and external physical anomalies are present as well. Half of infants die before their first week, and only 1 percent survive beyond their first year.
  • Trisomy 13. At times referred to as Patau syndrome, children with trisomy 13 have severe intellectual disabilities. As with trisomy 18, most infants born with trisomy have severe medical conditions and die very early in life and only 5 to 10 percent live beyond their first year.

Though trisomies 13, 18, and 21 are the most common, trisomy can occur with any chromosome. Most of those genetic anomalies, however, are not viable and result in miscarriage.

 

Also Worth Knowing

The risk of having a baby with a trisomy condition increases with the age of the mother, especially after her early 30s.

Statistically, the incidence of trisomy 21 (Down syndrome) is about 1 in 1,000 live births; for trisomy 18, this is about 1 in 5,000 live births, and for trisomy 13, about 1 in 10,000 to 21,700 live births (the median figure being 1 in 16,000 live births).

However, there are no precise figures on how common Down syndrome and other trisomy conditions are, as some parents elect not to carry a fetus that has been diagnosed as such to term. Such abortions are naturally a highly emotional issue, with strong viewpoints even within each of the Pro Choice, Pro Life, and disability advocacy communities.

Notable African American Women Make History, Despite Their Disabilities

harriet_tubman_1895-1          rosa-parks

fannie_lou_hamer_1964-08-22      Wilma Rudolph

 

February is Black History Month, and March is Women’s History Month. Many notable African American women made lasting contributions despite their disabilities. It is important, however, to “see the person, not the disability.” The late Australian comedienne and disability advocate coined the term inspiration porn in protest that people with disabilities should be objects of inspiration to make non-disabled people feel good. Four examples, from top to bottom and left to right, are Harriet Tubman (1822–1913), abolitionist known for her work on the Underground Railroad, Fannie Lou Hamer (1917–1977), civil rights activist, and Maya Angelou (1928–2014), laureate poet, and Wilma Rudolph (1940–1994), track and field Olympian.

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.