spinal muscular atrophy

Type: 
Topical Term
Subfield: 
a
Alias: 
spinal muscular atrophy

Strangers assume my girlfriend is my nurse

"Twenty-something author, blogger, and entrepreneur Shane Burcaw . . . [presents] an essay collection about living a full life in a body that many people perceive as a tragedy. From anecdotes about first introductions where people patted him on the head instead of shaking his hand, to stories of passersby mistaking his able-bodied girlfriend for a nurse, Shane tackles awkward situations and assumptions with humor and grace"--Provided by publisher.

The first thing about you

2022
"When fifteen-year-old Harris moves with his family from California (home of beautiful-but-inaccessible beaches) to New Jersey (home of some much-hyped pizza and bagels), he's determined to be known as more than just the kid in the powered wheelchair. Armed with his favorite getting-to-know-you question ("What's your favorite color?"), he'll weed out the incompatible people--the greens and the purples, people who are too close to his own blue to make for good friends--and surround himself with outgoing yellows, adventurous oranges, and even thrilling reds. But first things first: he needs to find a new nurse, stat, so that his mom doesn't have to keep accompanying him to school. Enter Miranda, a young nursing student who graduated from Harris's new high school. Beautiful, confident, and the perfect blend of orange and red, Miranda sees Harris for who he really is--funny, smart, and totally worthy of the affections of Nory Fischer, the cute girl who's in most of his classes. With Miranda at his side, Harris soon befriends geeky Zander (yellow) and even makes headway with Nory (who stubbornly refuses to reveal her favorite color). But Miranda is fighting her own demons, and Harris starts to wonder if she truly has his best interests at heart"--Provided by publisher.

Strangers assume my girlfriend is my nurse

"Twenty-something author, blogger, and entrepreneur Shane Burcaw . . . [presents] an essay collection about living a full life in a body that many people perceive as a tragedy. From anecdotes about first introductions where people patted him on the head instead of shaking his hand, to stories of passersby mistaking his able-bodied girlfriend for a nurse, Shane tackles awkward situations and assumptions with humor and grace"--Provided by publisher.
Cover image of Strangers assume my girlfriend is my nurse

Miracle boy grows up

how the disability rights revolution saved my sanity
2012
Autobiography of writer Ben Mattlin, a person with spinal muscular atrophy, discussing his childhood and family, societal changes brought by the disability rights movement, carreer, marriage, and children.

Not so different

what you really want to ask about having a disability
The disabilities advocate addresses the most common questions he receives about his life with spinal muscular atrophy, discussing his physical challenges, his everyday life, and the help he receives with optimism and humor.

Not so different

what you really want to ask about having a disability
Cover image of Not so different

Not so different

what you really want to ask about having a disability
2017
"A picture book answering the questions young children ask Shane Burcaw about his wheelchair and life with Spinal Muscular Atrophy with equal parts optimism, humor, and empathy."--OCLC.

Laughing at my nightmare

2014
"Shane Burcaw describes the challenges he faces as a twenty-one-year-old with spinal muscular atrophy. From awkward handshakes to having a girlfriend and everything in between, Shane handles his situation with humor and a "you-only-live-once" perspective on life"--Provided by publisher.

Laughing at my nightmare

"With acerbic wit and a hilarious voice, Shane Burcaw describes the challenges he faces as a twenty-one-year-old with spinal muscular atrophy. From awkward handshakes to having a girlfriend and everything in between, Shane handles his situation with humor and a "you-only-live-once" perspective on life. While he does talk about everyday issues that are relatable to teens, he also offers an eye-opening perspective on what it is like to have a life threatening disease"--.
Subscribe to RSS - spinal muscular atrophy