On Behalf of a Ten-Year-Old Girl: “Is This Who We Are”?

Apple Picking 5

 

“Is this who we are?” The title of this op-ed piece is very apt. It follows on an article in Buzzfeed, which describes a 10-year-old undocumented girl with a severe developmental disability. The girl, born in Mexico but brought to this country when she was three months old, was detained after she just had emergency surgery. So, I ask the same question: “Is this who we are?”

 

There are ways in which we can take action. The American Civil Liberties Union is leading a campaign to contact elected officials; the effort has been gaining publicity on Twitter and other social media channels via the #FreeRosa hashtag. We cannot remain silent. It’s not who we are.

 

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A New Disability Advocate: The Ford Foundation

The Ford Foundation has long been a leader in philanthropy, supporting causes and efforts to repair the world. However, several disability advocates took the foundation and its president, Darren Walker, to task for omitting this key constituency. With noteworthy candor, Mr. Walker acknowledged his error of omission and issued a public apology, backed by a pledge to advocate for people with all disabilities. In this article I wrote for the blog of the agency I work for, Advancing Opportunities, I cite Mr. Walker’s original letter, along with two very favorable responses from disability advocates.

Celebrating Individual Abilities

dude-with-ipad 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…

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World Autism Awareness Month & Day: A Call for Advocacy and Understanding

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 (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.

 National Autism Awareness Month is a public call for greater understanding, appreciation, and advocacy for persons with autism.

     Autism Awareness Month first came to be about 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 ASD is provided the opportunity to achieve the highest quality of life.”  This year, the Autism Society seeks to go beyond awareness and encourage the public to play an active role as advocates, to speak out for inclusion of people with autism in school and community, embracing acceptance and engaging in an appreciation of their talents and gifts and for what these children and adults are capable of.

In addition, April 2 is designated World Autism Awareness Day, as a result of a 2008 U.N. resolution (first proposed by Qatar).  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.”  These advocates and activists prefer the completed puzzle over the single puzzle piece that is a trademark of Autism Speaks.

An astonishing video from a television documentary has recently made the rounds via the social media.  It shows how a Carly, a teenage girl with autism, who grew up nonverbal, was finally to express her inner voice that had been captive for over a decade.  It proves how much there is inside children like her.  Her message would be one we should all listen to.

Early Signs of Autism
According to the U.S. Centers for Disease control, early signs of autism include the following, and early intervention is urged:

  • Does not babble or coo by 12 months
  • Does not gesture (point, wave, grasp) by 12 months
  • Does not say single words by 16 months
  • Does not say two-word phrases on his or her own by 24 months
  • Has any loss of any language or social skill at any age

World Autism Month is a call for all of us – and society at large – to understand and appreciate children and adults on the autism spectrum and, according to one blogger, to advocate for their parents as well.

Did You Know?

  • 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.
Asperger Asperger's syndrome advocate psychiatrist physician

Asperger’s syndrome is named for Hans Asperger, who was the first to describe the condition. He did not live to see this honor.

Springtime Heralds World Down Syndrome Day

March 21.  Spring is finally here.  It’s the vernal equinox; days are now longer than nights.  And Saturday, March 21, is World Down Syndrome Day.  This special day is to raise awareness and highlight the many positive qualities of people with Down syndrome, as well as to increase public understanding and civil discourse.  This year will mark the 10th annual World Down Syndrome Day, the fourth since was recognized by the U.N., in 2011.  Across the world, people with Down syndrome, their families, friends, teachers, co-workers, and supporters will be observing this special day.  March 21 is symbolic: as the 21st day of the third month, it represents the third copy of the 21st chromosome that characterizes Down syndrome.

World Down Syndrome Day 2015

     The theme of this year’s event, according to Down Syndrome International (DSI), is “My Opportunities, My Choices.  Enjoying Full and Equal Rights and the Role of Families.”   According to DSI, “On this day, people with Down syndrome and those who live and work with them throughout the world organize and participate in activities and events to raise public awareness and create a single global voice for advocating for the rights, inclusion and well-being of people with Down syndrome.”

The official statement of NDSS is, “We are able to do things that other people can and can’t do – just like anybody around the world.”

In the U.S., the National Down Syndrome Society (NDSS) provides a wealth of information via its Web site and social media.

  • First, here are the facts:
  • With facts in hand, it’s time to dispel myths and misconceptions of Down syndrome   For example, Down syndrome is not a rare disability. It is not hereditary. It is not more common among older parents.  People with Down syndrome do not have short lives.  Children and adults with Down syndrome do not have severe cognitive delays (and we must never use the R-word).
  • People with Down syndrome can share their Great Story online to inspire and inform others.
  • NDSS is seeking 21 people with that extra copy of the 21st chromosome to join Team NDSS21 in a fundraising spectacular.

If you are in New York City, be sure to check out the landmark Empire State Building, which will be illuminated in green, as part of an effort among several Down syndrome advocacy groups promoting “Random Acts of Kindness.”

Adds NDSS Ambassador, actor Chris Burke, “No matter who we are or where we live, give us a chance to do something with our lives so we can look forward to the future.”