And the Winner Is…

The winner of Britain’s Got Talent this year is…
The Lost Voice Guy!

He is very funny, but his message is serious (which makes for brilliant comedy.). As he says, “I was disabled before I was popular.” Furthermore, “People were laughing at me even before I became a comedian.”

One fan on YouTube has compiled this vignette of his journey:

We’ll let him tell of the rest of his journey!

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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.

We Are All Here for Cerebral Palsy

WCPD_Logo_English_Oct_6_preview

“I am here.… We are here… and we want to the world to know!” That is the message of advocacy and self-advocacy that people with cerebral palsy and those who work with them want to convey on Friday, October 6, World Cerebral Palsy Day 2017. This campaign involves six key issues:

 

Public awareness and putting an end to stigma and stereotype. When people know what cerebral palsy is and is not, they are more likely to know the best way to interact with those who have the condition. For example, impaired or labored speech may lead outsiders to accidentally believe the person with CP has a cognitive disability when, in fact, he or she does not. Moreover, otherwise well-intentioned people will interact with those with CP by talking in a childlike way or look upon them with pity.

 

Civil rights at all levels: national, state, and local. People with cerebral palsy have the right to accessibility in public buildings, transportation, and walkways. They have the right to vote and advocate for themselves and their peers. They have the right to information and jobs.

 

Medical and therapeutic knowledge and information. The three primary medical and therapeutic issues are addressing the cause (though, at present, this is not entirely known), early diagnosis to ensure proper care during the critical first years of life, and effective treatment that include physical and occupational therapy, speech therapy, and cognitive interaction. Recently, physicians and researchers worldwide have pledged to work together to create clinical practice guidelines for diagnosis and early intervention of cerebral palsy.

 

Quality of life beyond mere survival. Beyond medical and other therapies, the overall well-being of people with cerebral palsy is of paramount concern, that is, that providing access to family and residential support services that enable them to participate in all aspects of community living with the greatest degree of independence and fulfillment possible, both in their home and the community. It also involves offering respite services to families.

 

Education for people with cerebral palsy and those who teach them. Children with CP have the right to a “full and appropriate public education.” Inclusion involves more than placing the student in a corner and ignoring him or her. These children deserve full interaction according to their intellectual ability, as well as well-trained educators to teach them. Education is the key to an independent and fulfilling life; with advocacy and assistive technology, college can be a possibility, not just a dream.

 

Making a contribution to the community and society, economically, socially, artistically, and politically. A fulfilling life is one that enables a person to contribute to society, through employment, social opportunities, artistic expression, and political involvement, including exercising the right to vote.

 

Cooking with Karen 01Cerebral palsy is the most common physical disability and childhood birth defects. The condition affects physical movement, but people with CP may have any one or a combination of learning, intellectual, visual, or hearing disabilities. Worldwide, more than 17 million people living with CP, and some 350 million family, friends, and professionals support and care for and about them.

 

Before we were Advancing Opportunities, our agency was known as Cerebral Palsy of New Jersey. Although our name change reflects the fact that we serve people with all disabilities in New Jersey, cerebral palsy is still a significant part of what we do.

 

Passing It On: Choking Prevention for People with Developmental Disabilities — Special Needs Resource Blog

Children and adults with developmental disabilities have a higher risk of choking compared to the general population. Risk Factors Include: Some medical conditions that increase a person’s risk of choking are: Cerebral Palsy Seizure disorders Neurological and muscular disorders Down Syndrome Brain Injury Muscular Dystrophy Inability to swallow certain food textures and liquids Medication side […]

via Choking Prevention for People with Developmental Disabilities — Special Needs Resource Blog

In Addition
For New Jersey caregivers, this leaflet is a very good resource:

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ddd_health_bulletin_choking (2)_Page_2

Getting to Know the Miracle of Living with Deaf-Blindness

Helen Keller, deaf-blind graduate from college

Helen Keller is the most well-known deaf-blind person. With the advocacy of her teacher, Annie Sullivan, and her own determination, Helen proved one could undertake higher education and graduate.

 

 

We all know about Helen Keller, notably through the astonishing performance by Patty Duke in The Miracle Worker. Helen Keller is the most famous deaf-blind person; her name is a household word – and rightfully so. Yet, many people do not fully understand what it is to be deaf blind. With that, President Ronald Reagan in 1984 proclaimed the last week of June as Helen Keller Deaf Blind Awareness Week. To keep the awareness fresh, every year the Helen Keller National Center for Deaf-Blind Adults Youths and Adults (HKNC), publicizes this important declaration with a national campaign. HKNC is part of the National Family Association for the Deaf-Blind (NFADB).

 

 

What Is Deaf-Blindness?

What is deaf-blindness? According to the NFADB, “The term ‘deaf-blind’ seems to indicate the sum of deafness + blindness. However, the combination of these two sensory losses is much more like deafness multiplied by blindness = Deaf-blindness.” The combined loss of both senses poses unique challenges, with independence, access to  information, interpersonal communication, and special navigation is indeed profound. However, contrary to what most people believe, deaf-blindness is not a total loss of seeing and hearing. This is rarely the case. The National Center on Deaf-Blindness (NCDB) provides an excellent overview of the condition covering children, assessment in school, educational services, environment, communication, social-emotional concerns, and motor-movement issues.

 

Assistive technology in the form of Augmentative and Alternative Communication (AAC) devices are an important pathway to accessibility to full inclusion in society and independent living. http://www.assistivetechnologycenter.org/at/augmentative-communication  For New Jersey residents, the Advancing Opportunities Assistive Technology Center can be an excellent resource, offering both one-on-one assistance and the chance to try out costly equipment before committing to a purchase.

 

 

A Famous Deaf-Blind Person (Aside from Helen Keller)

Haben Girma is an Eritrean-American woman who was the first deaf-blind person to graduate Harvard Law School. As an attorney, she has been an outspoken disability advocate for inclusion, accessibility, and Universal Design. Haben recently with current Canadian Prime Minister Justin Trudeau, along with former Presidents Barack Obama and Bill Clinton, all of whom have praised her important work as a disability advocate and self-advocate.

 

 

Usher Syndrome

The most common form of deaf-blindness is a condition called Usher syndrome. Usher syndrome is characterized by hearing loss, combined with a loss of vision over time and deficiencies in balance, as the condition starts in the inner ear. There are three types of Usher syndrome, which are characterized by the severity of the symptoms. Usher syndrome is genetically inherited.

 

 

Did You Know?

  • Nearly 10,000 children and young adults are deaf-blind.
  • Some 2.4 million people in the U.S. have combined vision and hearing loss.

 

 

Further Resources

Project Sparkle Family’s Guide

Deaf-Blind Education

Eye on the Cure Blog 

Deaf-Blind International

National Coalition on Deaf-Blindness

European Deaf-Blind Network

 

Listen to Our Experience: On Epistemic Invalidation — Lighthouse

This is an excellent piece; it’s called “Listen to Our Experience: On Epistemic Invalidation,” from the Lighthouse blog. People with disabilities, especially “invisible” ones are being denied the services they seek and need. By extension, they are being denied their identity. This applies to other neurodivergent people, such as those of the transgender community.

Content warning: Discussion of the ways disabled people’s experiences are invalidated and disbelieved in society. References to pain ignored by doctors. Brief description of a fictional person with suicidal ideation.] Disabled readers. (And those with chronic illnesses, learning difficulties, and neurodivergences of all kinds.) Have you ever experienced any of the following? Having your experience […]

via Listen to Our Experience: On Epistemic Invalidation — Lighthouse

Reblogged: What does it mean for me to be truly #autistic? — Aspie Under Your Radar

I’ve been doing a lot of thinking about how my dreams and ambitions have really suffered and been stunted, because I’ve felt compelled to pursue them along neurotypical lines. I’ve somehow believed that if I followed “the rules” — of engagement, of customary behavior, of social interactions, of the right job or locale — that […]

via What does it mean for me to be truly #autistic? — Aspie Under Your Radar