NNLM Reading Club: Disability Health

NNLM Reading Club: Disability Health


Topic: Disability Health
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Disability Health

One in 4 U.S. adults - 61 million Americans - has a disability that impacts major life activities. Some people are born with one, some people acquire one as a result of an illness or injury, and some people develop one or more as they age.


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Disability Impacts All of Us Infographic
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Get Everyone Reading

Facilitate a Next Chapter Book Club

The Next Chapter Book Club offers a unique community-based book club program for adolescents and adults with intellectual and developmental disabilities. Learn how to participate in this program.

Read and discuss El Deafo

Blue book cover of El Deafo by Cece Bell

In this funny, poignant graphic novel memoir, author/illustrator Cece Bell chronicles her hearing loss at a young age and her subsequent experiences with the Phonic Ear, a very powerful—and very awkward—hearing aid. The Phonic Ear gives Cece the ability to hear—sometimes things she shouldn’t—but also isolates her from her classmates. She really just wants to fit in and find a true friend, someone who appreciates her as she is. After some trouble, she is finally able to harness the power of the Phonic Ear and become “El Deafo, Listener for All.” And more importantly, declare a place for herself in the world and find the friend she’s longed for.

A 2015 Newbery Honor Book and New York Times Bestseller

El Deafo | Cece Bell | Harry N Abrams Publisher | 2014 | 248 pages | ISBN: 978-1419712173 | Grade Level: 3-7 | Discussion Guide


Developmental Disorders

Autism Spectrum Disorder (ASD) is considered a "developmental disorder" because symptoms generally appear in the first years of life. It also is known as a “spectrum” because there is wide variation in the type and severity of symptoms people experience. ASD occurs in all ethnic, racial, and economic groups. Although ASD can be a lifelong disorder, treatments and services can improve a person’s symptoms and ability to function. To learn more, download the National Institute of Mental Health Autism Spectrum Disorder publication, available in English and Spanish.

Resources

CDCs Milestone tracker appIf you are a parent or caregiver, the Center for Disease Control (CDC) provides free materials for download including an app to help track your child's developmental milestones and to find guidance for intervention.

Invisible Disabilities

Disabilities are not always physical nor visible. Learning and reading disorders, as well as mental health conditions such as post-traumatic stress, anxiety, and eating disorders, are disabilities not always readily seen. Recognizing and understanding hidden disabilities is important to respectful engagement.

There's an NIH for that ... and more

The Centers for Disease Control and Prevention (CDC) has been involved in disability and health activities since 1988. The mission of the CDC Disability and Health Branch is to promote health and full participation in society by people with disabilities across the lifespan.

The Veterans Health Administration is America's largest integrated health care system, providing care and research to 9 million enrolled veterans at 1,250 health care facilities. Use its publications website to find posters and brochures. If you are a veteran who has a serious injury or chronic condition and are in need of caregiver support, use Find your Caregiver Support Coordinator.  The VA Center for Limb Loss and MoBolity (CLiMB) is a research group focused on preserving and enhancing mobility in Veterans and others with foot and leg impairments or amputations. It currently is recruiting volunteers to participate in a 2-year research study to see if using a Fitbit pedometer and an online peer group changes how much people with a lower limb amputation walk.

The Amputee Coalition, the nation's leading organization on limb loss, is dedicated to enhancing the quality of life for amputees and their families, improving patient care, and preventing limb loss. The Limb Loss Resource Center is an excellent place to locate services, ask questions, and order publications in both English and Spanish.

The National Institute of Neurological Disorders and Stroke is the leading NIH research center for finding effective approaches to halt the progression of Amyotrophic Lateral Sclerosis (ALS) diseaseThe ALS Association advocates for and empowers people affected by ALS to live their lives to the fullest.

The Eunice Kennedy Shriver National Institute of Child Health and Human Department (NICHD) ensures that every person is born healthy and wanted, that women suffer no harmful effects from reproductive processes and that all children have the chance to achieve their full potential for healthy and productive lives. The institute also aims to ensure the health, productivity, independence, and well-being of people through optimal rehabilitation.

The National Institute of Dental and Craniofacial Research (NIDCR) has several publications for download concerning oral care for persons with developmental disabilities.

A disability may limit what you can do physically or mentally or it can affect your senses making it harder to do normal daily activities; however, mobility aids and assistive devices can make tasks easier and help people engage whether at work, school, or home. The National Institute on Deafness and Other Communication Disorders (NIDCD) is the primary NIH organization for research on Assistive Devices. Assistive devices are tools, products, or types of equipment that help you perform tasks and activities. They may help you move around, see, communicate, eat, or get dressed. Some are high-tech tools, such as computers. Others are much simpler, such as a "reacher," a tool that helps you grab an object you can't reach.

Book: Every Note Played
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NNLM Reading Club Book

Do you want to share this book with your reading group? The Network of the National Library of Medicine (NNLM) has made it easy to download the discussion questions, promotional materials, and supporting health information.

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Discussion Guide for Every Note Played: A Novel
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Book cover Every Note PlayedAn accomplished concert pianist, Richard received standing ovations from audiences all over the world in awe of his rare combination of emotional resonance and flawless technique. Every finger of his hands was a finely calibrated instrument, dancing across the keys and striking each note with exacting precision. That was eight months ago. Richard now has ALS, and his entire right arm is paralyzed. His fingers are impotent, still, devoid of possibility. The loss of his hand feels like a death, a loss of true love, a divorce - his divorce. He knows his left arm will go next. Three years ago, Karina removed their framed wedding picture from the living room wall and hung a mirror there instead. But she still hasn’t moved on. Karina is paralyzed by excuses and fear, stuck in an unfulfilling life as a piano teacher, afraid to pursue the path she abandoned as a young woman, blaming Richard and their failed marriage for all of it. When Richard becomes increasingly paralyzed and is no longer able to live on his own, Karina becomes his reluctant caretaker. As Richard’s muscles, voice, and breath fade, both he and Karina try to reconcile their past before it’s too late.ebook icon Audio book icon

Read along with this Spotify Playlist to listen to the classical pieces described in Every Note Played.

Every Note Played | Lisa Genova | Simon & Schuster | 2019 reprint | 336 pages | ISBN: 978-1476717814

Headshot photo of Lisa GenovaAuthor

Lisa Genova is the New York Times bestselling author of Still AliceLeft NeglectedLove Anthony, and Inside the O'Briens. Lisa graduated valedictorian from Bates College with a degree in biopsychology and holds a Ph.D. in neuroscience from Harvard University. She travels worldwide speaking about the neurological diseases she writes about and has appeared on "The Dr. Oz Show," "Today," "PBS NewsHour," CNN, and NPR. Her TED talk, "What You Can Do To Prevent Alzheimer's," has been viewed over two million times.

Official Website of Lisa Genova

Interview

Book: Switched On
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Switched-On book cover with a man riding a motorcycle

In 2007 John Elder Robison wrote the international bestseller Look Me in the Eye, a memoir about growing up with Asperger’s syndrome. Amid the blaze of publicity that followed, he received a unique invitation: Would John like to take part in a study led by one of the world’s foremost neuroscientists, who would use an experimental new brain therapy known as TMS, or transcranial magnetic stimulation, in an effort to understand and then address the issues at the heart of autism? Switched On is the extraordinary story of what happened next as a research subject in a brain study at Beth Israel Deaconess Medical Center, a teaching hospital at Harvard Medical School.ebook icon Audio book icon

Switched On: A Memoir of Brain Change and Emotional Awakening | John Elder Robison | Spiegel & Grau | 2017 reprint | 320 pages | ISBN: 978-0812986648

Review

Reading icon imageSenior, Jennifer. "In Switched On, John Elder Robison's Asperger's Brain Is Changed." The New York Times Books. March 20, 2016(link is external)


Author

John Elder Robison is a world-recognized authority on life with autism, and the New York Times bestselling author of Look Me in the EyeBe Different and Raising Cubby. Robison is the neurodiversity scholar in residence at the College of William & Mary, and he serves on the Interagency Autism Coordinating Committee, which produces the U.S. government’s strategic plan for autism spectrum disorder research. He is an active speaker and an advocate for people on the autism spectrum. Robison grew up in the 1960s before the breadth of the autism spectrum was fully understood, so he was not diagnosed with Asperger's until age 40. After dropping out of high school, he worked in the music business where he created sound effects and electronic devices, the best known of which were the signature guitars he built for KISS. A machine aficionado and avid photographer, Robison lives with his family in Amherst, Massachusetts.

Official Website of John Elder Robison

Interview

Book: Tough As They Come
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NNLM Reading Club Book

Do you want to share this book with your reading group? The Network of the National Library of Medicine (NNLM) has made it easy to download the discussion questions, promotional materials, and supporting health information.

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Discussion Guide for Tough As They Come
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Tough As They Come book cover

While on tour in Afghanistan, United States Army Staff Sergeant Travis Mills was caught in an IED blast days before his twenty-fifth birthday. He survived, but at a cost, becoming one of only five soldiers from the wars in Afghanistan and Iraq to survive a quadruple amputation. Suddenly, Travis faced a future drastically different from the one he had imagined for himself. Tough as They Come is the story of his remarkable recovery and an inspirational account of willpower and endurance.ebook icon Audio book icon

Tough As They Come | Travis Mills | Convergent Books | 2016 reprint | 264 pages | ISBN: 978-1101904800

Author

Headshot photo of Travis MillsAfter graduating from high school in Vassar, Michigan, Travis Mills joined the United States Army and was assigned to the 82nd Airborne Division, where he rose to the rank of staff sergeant. He is now a retired United States Army soldier who became a quadruple amputee while serving in Afghanistan. During his three tours of duty in Afghanistan, Mills was awarded the Purple Heart and Bronze Star medals. He speaks across the country, motivating others to live by his motto: "Never give up. Never quit." He has also established a foundation to build a retreat for other special-needs veterans injured in combat and their families.

Official Website of Travis Mills

Interview