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.

 

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Living with “Everyday Asperger’s”

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Everyday Aspergers, by Samantha Craft

A little girl, a free spirit, loved to spend hours absorbed in the sights, sounds, and smells of nature.  She saw herself as a caterpillar, “set free upon endless green, nibbling at the gifts before her.”  That is, “until the rain came.”  Caterpillar became Butterfly, lovely and able to reach great heights.  However, as she did so, her world became both smaller and larger.  Everything was unfamiliar and ever-changing.  With all that was good, also came evils Caterpillar had never known.  Yet she was able to see “Caterpillar Land,” and realized that “butterflies don’t have to let go of the caterpillar to fly.”

In the same manner, Samantha Craft goes between adulthood and childhood, relating each one to the other.  The challenges of Butterfly are those of an autistic woman on the higher end of the spectrum – Asperger’s.  Craft offers 150 vignettes of “everyday Asperger’s,” providing an insight into living with – and ultimately accepting – the condition.  Though most of the time, Craft speaks as Butterfly, in some of the pieces, she ventures into memories of her childhood and teen years, when she was Caterpillar.  These vignettes are not in chronological order.  I fact, at times they seem random, a reflection of the thought process of someone with ADHD, a condition that often accompanies autism.  Yet, everything is held together by the book’s theme of describing life with “Everyday Apserger’s.”

Early on, Craft refers to herself as “an autistic woman” and “an Aspie,” not “a woman with autism” or “a woman with Asperger’s.”  These conditions are not something she has; they are who she is.  This is the essence of the neurodiversity movement, as described by Craft’s colleague, Steve Silberman, in his groundbreaking book, NeuroTribes.

Craft writes with a spirit of humor and warmth, both of which are present even in her darkest moments.  Craft earned respect and gained a following with her essay, “Ten Traits (Females with Aspergers,” which is included here.  Since then, more and more women (and men) with Aspergers have recognized themselves, identifying with Crafts adventures and misadventures, and Everyday Aspergers is the product of ten years of such essays.  “This journey is all about my identity,” says Craft.  “I’m trying to figure out how Asperger’s defines who I am as an individual.”  This early essay sets the tone for such questions as what role she would like to play, as an alien dropped down from “Planet Aspie” to a world in which they are wired differently.  Or is she different?  Most likely, in keeping with the theme of neurodiversity, we are all different.  That said, Craft still acknowledges the importance of people with Asperger’s in recognizing when they commit social faux pas and how to best adapt to society at large and find peace within themselves.

International Day of Persons with Disabilities & “Achieving 17 Goals for the Future We Want

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Although most awareness months and days are on a national scale, this December will feature a global undertaking to raise awareness and promote advocacy.  December 3 is the United Nations International Day of Persons with Disabilities.  This is an effort to “promote action and raise awareness about disability issues and draw attention to the benefits of an inclusive and accessible society for all.”  Observed since 1992, this day focuses on a different theme around the world each year.  For 2016, the theme is “Achieving 17 Goals for the Future We Want.”

The objective of the International Day of Persons with Disabilities is to raise awareness of all types of disabilities and dispel archaic ideas and stereotypes and stigma, as these are often “the greatest barrier to their full and equal participation in society and development on an equal basis with others.”  Moreover, over the course of our lives, most of us will become disabled to some degree.

Nearly 1 in 7 people worldwide live with a disability.  Of great concern are the barriers they face, which prevent them from being fully included in important parts of daily life, in such areas as transportation, employment, and education.  In addition, many people with disabilities are not fully able to participate politically, a key to maintaining active citizenship in a democracy and being self-advocates for needed changes.

The International Day of Persons with Disabilities recognizes not only physical disabilities, but also mental, cognitive, and emotional disabilities.  Already a vulnerable group, these people, often face discrimination in employment and other areas of daily living or, at the very least, confront considerable hurdles to accomplishing these tasks effectively.

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Addressing Inclusion

Last year, the theme was “Inclusion Matters: Access and Empowerment for People of All Disabilities.”  As a result, the UN earlier this year adopted 17 Sustainable Development Goals to provide a greater degree of inclusion for all people with disabilities.  The UN efforts address the current status of the UN Convention on the Rights of Persons with Disabilities, an international treaty comprising eight principles:

  • Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons
  • Non-discrimination
  • Full and effective participation and inclusion in society
  • Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity
  • Equality of opportunity
  • Accessibility
  • Equality between men and women;
  • Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities.

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And, did you know:

We Are All Here for Cerebral Palsy

“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 Wednesday, October 5, World Cerebral Palsy Day 2016.  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.  Two people who have shared their experiences of living life with cerebral palsy to the fullest are Sasha and Charisse.
  •  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.Cerebral palsy is the most common physical disability.  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.

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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.

 

 

 

Revving Up the Vote for National Disability Registration Week

As part of a national campaign to urge people with all disabilities to speak out for themselves through the power of the vote, the American Association of People with Disabilities (AAPD) and other advocacy organizations have launched the REV UP campaign.  A major part of this effort is National Disability Voter Registration Week, July 11–15, 2016, which was established last year, as part of the 25th anniversary of the Americans with Disabilities Act (ADA).

Why?  The primary reason, according to AAPD, is that “There are nearly 30 million people with disabilities eligible to vote when registered. This number does not even include ‘the ripple effect’ of family, friends, and service professionals who will vote in-line with disability interests….  REV UP campaigns around the country will make a concerted effort to get more people with disabilities registered to vote, educate voters about issues and candidates, promote turnout of voters with disabilities across the country, engage candidates and the media on disability issues, and protect eligible voters’ right to participate in elections.”  A recent article in the Huffington Post also outlines why people should care, providing statistics and challenges people with various disabilities face.

Justin-Dart Rev Up

Justin Dart, the actor who spurred the ADA, is the subject of a poster, with the caption “Vote as if your life depends on it.  Because it does!”

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The DisabilityVisibility #CripTheVote campaign, covered in this blog on June 3 is one of several co-sponsors, an advocacy organization founded and run by people with disabilities to raise awareness and appreciation for “America’s largest minority.”  As Alice Walker said, “The most common way people give up their power is by thinking they don’t have any.”  #CripTheVote will follow up on Sunday, July 24, 5:00 to 6:00 p.m. ET with a Twitter chat, “Disability, Violence and Public Policy.”

In addition to the many links AAPD and other groups provide, Disability Thinking is another worthwhile source, with many links arranged by category.

It is also worthwhile to note that people in the Deaf community are asking why most political ads lack captioning to make them accessible to Deaf and hard-of-hearing voters.   Indeed, the campaign is about both accessibility and having candidates for public office address the needs and injustices all to many people with disabilities face.

Our Most Notable and Favorite Disability Articles for the Week Ending June 24, 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.

Amusements

Amusements. Summertime in New Jersey – Time to dust off the old trailers for the many local fairs throughout the Garden State in New Jersey. Photo by Daniel L. Berek, 2016

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

The Boonton School District (Morris County, NJ) unites to raise awareness of autism.

 

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

Els was once viewed as the future of golf, but his son’s autism made him look instead to a better future for children with the condition.

Here are some effective ways to connect with your child with autism through Minecraft.

A mom expresses admiration all for her daughter with a learning disability has done.

A mom raises awareness of the many gifts of her son with Down syndrome, after he was excluded from a birthday party.

 

 

Special education (including college for students with disability):

While it’s not everyone’s choice, here is a resource that could be helpful: Online Schools Center guide to navigating an online education for students with disabilities.

These students may be nonverbal, but they have a great deal to share and celebrate, thanks to a deeply caring teacher.

 

 

Civil Rights

The White House holds a news conference on LGBT and disability issues.

 

 

Inspirational and Informative (or Both!):

“We Fell in Love” – A beautiful photo essay documents people with a disability in loving relationships.

It took 14 years, but this couple with Down syndrome were finally able to get married.

Meet the talented British actor with Down syndrome who landed a major role.

 

 

Advocacy and self-advocacy:

Do people with disabilities in New Jersey and their families need the services of an ombudsman?

 

 

Assistive technology:

Assistive technology apps can help students with special needs maintain academic skills over the summer.

Presented are further updates on the applications of 3-D printing for assistive technology.

Google Autism Glass helps children with ASD perceive emotions.

 

 

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

More and more companies find hiring workers with autism is good business.

Ten things one should know about paratransit, accessible transportation for people with a disability.

 

 

Disability awareness:

The friendly blue fish with short-term memory problems goes looking for her family and takes a star turn in this sequel to Finding Nemo.

 

 

Medical news – research:

USC scientists have mapped an uncharted portion of the mouse brain to explain which circuit disruptions might occur in disorders such as Huntington’s disease and autism.

 

 

People with disabilities in the arts:

A Canadian artist may define his autism, but he doesn’t let his autism define him.