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.”

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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.

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A Brief Look at the Intersection of Women’s History, Black History, and Disability

The International Women's Day logo - Be bold for change

International Women’s Day 2017: #BeBoldForChange https://www.internationalwomensday.com/

 

 

International Women’s Day and Women’s History Month: In the US and most countries around the world, women with disabilities have faced multiple hardships in the form of reduced access and sometimes outright discrimination in education, housing, and employment – both as women and as people with a disability. In addition, women of color often face a third challenge. A blog writer took a look back on 14 remarkable women of color of the past who have made powerful differences for the present and the future.

As February was Black History Month and March is Women’s History Month, we’ll examine the intersection of the two through the lens of disability. 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.

Social worker and disability advocate Vilissa Thompson in her excellent blog “Ramp Your Voice” has compiled a list of important works and other resources of these individuals.

 

Harriet Tubman black woman disabled disability

Harriet Tubman (1822–1913)

 

 

 

 

 

 

 

 

 

Harriet Tubman (1822–1913), abolitionist known for her work on the Underground Railroad, suffered epileptic seizures. Because of her short stature, she was seen among slave owners as disabled, a low risk of escape.

 

 

Fannie Lou Hamer (1917–1977), Civil Rights Activist black woman disabled with a disability from polio

Fannie Lou Hamer (1917–1977), Civil Rights Activist

 

 

 

 

 

 

 

 

 

 

Fannie Lou Hamer (1917–1977), was a civil rights activist who suffered physical disabilities from childhood polio.

 

 

Maya Angelou (1928–2014), laureate poet

Maya Angelou (1928–2014), was laureate poet and wrote a series of memoirs.

 

 

 

 

 

 

 

 

 

 

Maya Angelou (1928–2014), laureate poet, found a voice in her memoirs and poetry. As a child, she developed selective mutism after a sexual assault.

 

 

Wilma Rudolph (1940–1994) track Olympian with physical disability

Wilma Rudolph (1940–1994), track and field Olympian

 

 

 

 

 

 

 

 

 

 

Wilma Rudolph (1940–1994) overcame childhood paralysis from the polio virus to become a track and field Olympian, the fastest woman in the world.

Honorable mention goes to Johnnie Lacy (1937-2010), an African American woman who from her wheelchair tirelessly advocated for the disability community. She has been recognized by the United African-Asian Abilities Club and the Temple University Disability Studies newspaper. (No copyright free photo of Ms. Lacy is available.)

Meet Edward V. Roberts, Disability Advocate

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This is the wonderful doodle that appeared on the Google search page on January 23, in honor of the birthday of Edward V. Roberts.

Born on this day, Edward Verne Roberts was an American activist. The first student with multiple severe disabilities to attend the University of California, Berkeley, Edward was a pioneering disability advocate. A campus at the prestigious university has been named in his honor. In 2010, he was recognized in a state day in California. In addition, his wheelchair has been preserved at the Smithsonian, “in recognition of obstacles overcome.”

Google featured this little known but important figure in today’s doodle. They also provide an online video and exposition dedicated to Roberts and the history of the disability rights movement.

“So I decided to be an artichoke—
prickly on the outside but with a
big heart.”

 

In addition to the informative links above that tell of the life of Edward Roberts, UC Berkeley has archived his oral history.

 

Our Most Notable and Favorite Disability Articles for the Week Ending January 20, 2017

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.

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Though the sun is setting on this old caboose, with bright colors this wonderful artifact bears witness to the technology of an earlier age. It’s owner, Southern Railroad Company of New Jersey still provides local service from Winslow Junction (Gloucester County), where this car was spotted. Photo: Daniel L Berek

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.

 

Advancing Opportunities job announcement of the week:

Advancing Opportunities has immediate openings for part-time Direct Support Professionals in residential care programs throughout New Jersey.

dv1954021Candidates will be providing direct care to men and women with disabilities in residential support programs and group home settings. This entails includes supervision and/or assistance with personal care, daily living activities, recreational pursuits, transportation, medical appointments, or any other needs the individuals may have.

  • Job fair: Wednesday, January 25, 10:00 a.m. to 3:00 p.m.: Elizabeth YWCA, 1131 E Jersey St, Elizabeth, NJ 07201

If this location or time is not convenient, please visit: http://advopps.org/directcare_openings

 

 

Disability in the news (mostly in New Jersey, the population we serve):

This article explains why employers in NJ should consider hiring workers with disabilities.

 

 

For parents of a child with a disability (parenting, special needs):

Here are six tips to help your child with Asperger’s syndrome with social skills.

We thought some parents might be interested in the adaptive and sensory-friendly jeans this small business creates.

Worried about your child’s stimming? Here’s what you can do.

 

Special education & medical news:

The meaning and importance of executive function are well described in this blog piece.

 

Advocacy and self-advocacy:

Advocating for your child with ADHD or other learning disabilities at school.

 

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

The Special Olympics has a program, The Unified States of America, to promote inclusion among abilities and ethnicities.

 

 

People with a disability in the community (disability rights and acceptance; inclusion):

Reliable self-driving cars are critical to the independence and overall well-being to people with disabilities, according to a new Ruderman Family Foundation white paper.

 

 

Disability awareness and appreciation:

Here’s a nice article about why Speechless is the antidote to inspiration porn.

Autism is big. But I am bigger.

Opinion piece: Disability is fundamentally a human concern, transcending politics.

 

Animals and animal therapy:

Therapy dogs and other pets help people manage their schizophrenia and other mental illnesses.

 

It Is Important to Reflect on Our Work to Continue Serving Our Individuals with Disabilities.

lady-with-laptop


Important to Ask Ourselves…

For those of us who are direct-support professionals, in residential and respite care, at the end of the day, it is important to reflect on our work by asking ourselves the following:

  • How did I help this individual?
  • What did I do to enrich his life?
  • How did I acknowledge her accomplishments?
  • How did I ensure his voice was heard and that he had the opportunity to make his own decisions?

In addition to asking these questions of ourselves to serve others, it is important to document the answers on reports on the progress toward their ISP goals! This last consideration can be critical for an agency to continue to receive funds… to keep on serving their consumers with disabilities.

The Genius of Braille: A Real Eye-Opener

Louis Braille was a disability advocate for the blind.

Louis Braille (1809-1852)

In 1809, on January 4, Louis Braille was born.  At age 5, the curious boy was blinded in an accident with one of his father’s tools.  However, Louis refused to let his disability stop him from getting the most of life.  As a teen at the Royal Institute for Blind Youth in Paris, he self-advocated by developing the system of writing that, to this day, bears his name.  In his honor, the 4th of January has been declared World Braille Day.

Braille’s alphabet consists of a series cells containing, in a 2 x 3 grid, as a raised dot or a blank space. Though there are only six dots or spaces, they can be combined in 64 different ways, allowing for other characters, including letters from the alphabets of other languages.  In other words, braille is not a language, but a code for transcribing many other languages.  Nowadays, there are two main types of braille: Grade 1 and Grade 2.  Grade 1 is a functional letter-by-letter transcription of text.  Grade 2 uses combinations of letters in a single braille character, allowing for much shorter documents; it is the most widely accepted form of braille.

braille-alphabet-2

 Br The basic braille alphabet consists of cells of six dots, raised in a variety of combinations and permutations. There are also symbols for punctuation and letter combinations.

Braille provides access to written communication for blind people, in other words, accessibility beyond physical means such as access ramps.  In other words, braille is a form of inclusion, allowing everyone to participate in an important aspect of society, regardless of their disability.  In creating the braille system for reading and writing for the blind, Louis Braille was advocate and self-advocate for people with disabilities par excellence.  And for his part in developing the braille writer, Louis Braille was also one of the great assistive technology specialists of all time.

 

 

brailler-4

The braille writer creates the raised dots for braille text rather than printing individual letters or characters. As with the typewriter, the basic layout of the braille writer has been incorporated in modern assistive technology braille input devices.

“Access to communication … is access to knowledge, and that is vitally important for us if we [the blind] are not to go on being despised or patronized by condescending sighted people. We do not need pity, nor do we need to be reminded we are vulnerable. We must be treated as equals—and communication is the way this can be brought about.”

—Louis Braille

 

 

 

October Is Dyslexia Awareness Month: Appreciating Extraordinary Creativity

Brian, who has dyslexia, benefited from assistive technology from Advancing Opportunities

With a positive attitude and the help of the proper assistive technology, people with dyslexia can succeed in school and go to college. Brian Meersma, featured here as a high school student on Advancing Opportunities Assisitve Technology Center YouTube Channel, went on to graduate college with honors and become an expert AT advocate and respected blogger.

 

Two brothers from Ohio were the first to escape the surly bonds of Earth with a powered, controllable airplane.  The creator of Britain’s most successful independent airline by far, Virgin Atlantic, is seeking to soar higher than the rest, planning commercial flights into lower Earth orbit.  What do Orville and Wilbur Wright and Sir Richard Branson have in common?  They have dyslexia.  So did Michelangelo, Leonardo da Vinci, Benjamin Franklin, Thomas Alva Edison, Albert Einstein, and Steve Jobs, not to mention “our own” Bruce Springsteen.  What these individuals also share is an extraordinary creativity that has enabled them to meet the challenges of their disability and put their ingenuity to use in ways that have literally changed the world.

Dyslexia is neurological condition in which one has difficulty recognizing words, which may make understanding written text or learning a foreign language very difficult.  In addition to reading, writing, spelling, and speaking can be challenging.  Dyslexia affects 17 percent, or one in six school children.

Large-print books and audio recordings, very helpful to people with dyslexia, have been available for a while.  More recently, however, such assistive technology has become increasingly sophisticated.  One notable Advancing Opportunities success story is a young man named Brian Meersma.  Back in middle school, Brian struggled to read.    His language arts teacher thought he was simply not making the effort.  “It was just so frustrating, because I was trying my best, but she didn’t realize it,” he said.    Brian’s parents learned about the Assistive Technology Center at Advancing Opportunities.  His specialist introduced him to several tools.  Learning Ally and Bookshare are services that allow him to download books that are either pre-recorded or, through special software, convert written words to speech.  Kurzweil 3000 is a downloadable app that provides text-to-speech in seven languages, “reading” any digital text aloud, from textbooks to the Internet.  Kurzweil 3000 comes with virtual sticky notes, graphic organizers, writing templates, and spell-checking dictionaries.  For Brian, “assistive technology has been a lifeline,” says his mom.  Brian was not only accepted to an Ivy League college, he graduated with honors and is a well-known and highly respected blogger.

To recognize the talents so many people with dyslexia have and to spread awareness of tools and accommodations available to this population, the International Dyslexia Association in 2002 declared October National Dyslexia Awareness Month.  In 2015, the U.S. Senate passed a resolution to this effect, in addition to expanding the definition of dyslexia and the types of services these students are entitled to not only succeed, but also soar.