The Medical Humanity of Oliver Sacks: In His Own Words

http://goo.gl/65dl0D

We science-medicine-poetry junkies, along with a sizeable chunk of the world’s population, are mourning the death of Oliver Sacks, the neurologist and author who died last Sunday from metastasized melanoma. And as enthusiasts of Dr. Sacks’ catechisms on the soul of the patient, we turn to his own words of mourning, written over 40 years ago for his close friend, the poet WH Auden:

Wystan’s departure affected me like a sudden darkness, the eclipse of all light and reality from the world. I knew him to be a man mortally ailing, and when he left [the U.S.] I mourned his death in advance. I suddenly realized what I had never properly avowed before, that he had been a beacon for me, a reality-bearer, so that his departure subtracted reality from my world… and there is a Wystan-shaped space which will never be filled.

10 Great Books About Disabilities For Grown-Ups

http://goo.gl/Ewx90B

If you’re looking for a few good books to read this summer, consider diving into a story about disability.  While the subject matter is emotionally challenging, it also invites the reader to see true beauty in life.  Most of these books dwell on themes such as self-awareness, transformation and the value of human relationships.  Here are ten fiction and non-fiction titles for adults that can give the reader a new perspective on ability and disability.

1. Know the Night by Maria Mutch (2014)

Know the Night has become one of my all-time favorite books.  The author is a poet who uses creative literary techniques such as wordplay, metaphor, point and counterpoint in her prose.  The book is not just a personal memoir about raising a child with multiple disabilities; it is also a thoroughly researched meditation on the nature of night, darkness, night-waking, isolation, exploration and jazz.

If you or someone you love has a sleep disorder, then you probably already know that all of those things are intimately connected – the author’s explanation is original and hopeful.


Airlines Encouraged To Better Serve Flyers With Disabilities

http://goo.gl/OOwXOe

A new guide from the U.S. Department of Transportation is spelling out the rules air carriers must follow when dealing with travelers who have autism and other developmental disabilities.

The federal agency sent guidance to airlines this summer detailing their responsibilities under the Air Carrier Access Act. Developed in coordination with The Arc and the Autistic Self Advocacy Network, the documentation does not lay out any new requirements, but clarifies existing rules for airlines and travelers, the agency said.

“Recent incidents highlight the need for a guidance document focusing on developmental disabilities, to assist individuals on the autism spectrum and individuals with other developmental disabilities know their rights,” the Department of Transportation said in a statement to Disability Scoop.


Oliver Sacks, Casting Light on the Interconnectedness of Life

Sorry to see him go...

http://nyti.ms/1IvbXjM

Dr. Sacks, who died on Sunday at 82, was a polymath and an ardent humanist, and whether he was writing about his patients, or his love of chemistry or the power of music, he leapfrogged among disciplines, shedding light on the strange and wonderful interconnectedness of life — the connections between science and art, physiology and psychology, the beauty and economy of the natural world and the magic of the human imagination.

In his writings, as he once said of his mentor, the great Soviet neuropsychologist and author A. R. Luria, “science became poetry.”

Why Parenting Blogs About Autism and Grief Don’t Sit Well With Me

http://goo.gl/5aUVmm

I understand that it’s frustrating as a parent not to understand what your child wants, and it can hurt to see your child left out of things by their neurotypical peers.

I used to feel like that. It would sadden me to think that my son couldn’t attend a birthday party without having violent meltdowns and that a simple trip out would prove so problematic.

I’ve noticed on social media recently, there seem to be more and more posts where the parents are lamenting the child they have “lost,” saying autism has taken their joy. That they hate autism and grieve for what their parenthood and their children’s childhood should have been.

They proclaim they are “warrior moms” battling their own children’s autism.

Yet they don’t seem to realize that their children are autistic, that autism isn’t a separate part of their child — it’s not an outside entity that has invaded them.

It’s part of their neurological makeup and affects all that they do, how they react and what they feel.


To My Daughter With Down Syndrome on Her Wedding Day

http://goo.gl/FNU85x

We all wish the same things for our children. Health, happiness and a keen ability to engage and enjoy the world are not only the province of typical kids. Their pursuit is every child’s birthright. I worried about your pursuit, Jillian.

I shouldn’t have. You’re a natural when it comes to socializing. They called you The Mayor in elementary school, for your ability to engage everyone. You danced on the junior varsity dance team in high school. You spent four years attending college classes and made lifelong impressions on everyone you met.

A decade ago, when a young man walked to our door wearing a suit and bearing a corsage made of cymbidium orchids said, “I’m here to take your daughter to the Homecoming, sir,’’ every fear I ever had about your life being incomplete vanished.

Now, you and Ryan are taking a different walk together. It’s a new challenge, but it’s no more daunting for you than anyone else. Given who you are, it might be less so. Happiness comes easily to you. As does your ability to make happiness for others.


Court Restores Overtime Wage Rules For Home Care Workers

http://goo.gl/dLIqNT

Nearly 2 million home care workers are in fact eligible for minimum wage and overtime protections if the Department of Labor says so, a federal appeals court ruled Friday. Leaders of a home care industry association said they might seek Supreme Court review of the decision.

In 2013, the Department of Labor extended these wage and overtime protections to home care workers, stating that home care agencies no longer could claim that the workers were exempt from Fair Labor Standards Act provisions.

The DOL’s move was challenged by trade organizations the Home Care Association of America and the National Association for Home Care & Hospice (NAHC). The associations have argued that the new protections could actually harm workers, if agencies now reduce hours to avoid paying overtime, and that access to care also could be compromised as costs go up.

A federal judge subsequently ruled that the DOL did not have authority to make the changes, but the ruling on Friday from the U.S. Court of Appeals for the District of Columbia Circuit came to a different conclusion.

“The Department’s decision to extend the FLSA’s protections to those employees is grounded in a reasonable interpretation of the statute and is neither arbitrary nor capricious,” Judge Sri Srinivasan wrote on behalf of the three-member panel.


Rewriting Autism History

http://goo.gl/vlELrV

History is dotted with simultaneous independent discoveries. From the Möbius strip to the electric telegraph, great minds sometimes do think alike. And for decades now, the Asperger-Kanner mind meld has been the accepted wisdom of the discovery of autism.

Steve Silberman, a writer for Wired, had worked on a book about autism for about a year. It was a topic with which he was familiar; he’d written a widely read story in 2001 on the prevalence of the disorder, which is estimated to affect one in 68 children. The new project aimed, in part, to document the history of autism research, and Silberman had a hunch that the conventional wisdom surrounding the allegedly serendipitous discovery of autism by two clinicians working independently was, at best, incomplete.

It’s a famous story, frequently told, including in The Atlantic. As Silberman put it, fourteen years ago: