10 Captivating Books That Portray Disease and Disability Through Fiction

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Reading fiction can be wonderful therapy. It allows you to read about a character’s experience and maybe apply it to your own. Or it can let you escape the real world and delve into a fantasy for awhile.

We decided to find 10 books of fiction that center on a character living with a disease or disability. Perhaps you’re looking for a character to relate to. Perhaps you want to learn how someone going through a health challenge may feel. Either way, these books deserve a spot on your reading list:

1. Deenie by Judy Blume Deenie

Her mother is pushing her to become a model, but 13-year-old Deenie just wants to worry about everyday teenage affairs: school, friends and whether or not the cute boy she has a crush on likes her back. But when Deenie is diagnosed with scoliosis, both her and her mother’s concerns are turned upside down. Deenie must add wearing a body brace for the next four years to the already difficult terrain of young adulthood, and her mother must reevaluate her priorities.

Lottery 2. Lottery by Patricia Wood

Perry Crandall has an intellectual disability, and is constantly having to tell people he’s not retarded. The 32-year-old lives with his grandmother, who teaches him important life lessons, such as how to study the dictionary to learn new words, how know who’s trying to take advantage of you and how to play the lottery. After his grandmother passes away, one of Perry’s lottery tickets ends up winning him the $12 million-dollar jackpot. Suddenly, everyone in town wants to be his best friend, and Perry will have to heed his grandmother’s advice more than ever.

3. Blind by Rachel DeWoskin Blind

Emma Sasha Silver is a sophomore in high school when she loses her sight in a freak accident. At first, she cannot eat, get dressed or leave the house alone, and she lashes out at her family, therapist and other blind teens who try to help. Then, her classmate turns up dead as the result of an apparent suicide. As Emma works through what happened to her friend, she slowly begins to embrace her disability as a part of her and discovers her life is worth living after all.

Colin Fischer 4. Colin Fischer by Ashley Edward Miller and Zach Stentz

Colin Fischer is a 14-year-old high school student living with autism. He’s extremely intelligent but has difficulty making friends, abhors being touched and needs notecards to help him recognize facial expressions. When a gun is discovered in the school cafeteria and Wayne Connelly, the school bully who picks on Colin incessantly, is accused, Colin knows he must set the school administration straight. Readers follow Colin as he works to prove Wayne’s innocence and are given a glimpse into his psyche through his meticulous notebook entries.

5. Jerk, California by Jonathan Friesen Jerk, California

Sam Carter had a difficult childhood. He lost his father, and the man his mother remarried is domineering and cruel. Because of his Tourette syndrome, he lives in a consistent state of involuntary tics, twitches and verbal outbursts. Growing up, he was constantly bullied and never made friends easily. Now a young man, Sam has discovered some truths about his father that prompt him to make a cross-country trip, which he hopes will help him better understand his Tourette syndrome.

Flowers for Algernon 6. Flowers for Algernon by Daniel Keyes

After Algernon, a laboratory mouse, undergoes an experimental procedure that causes his intelligence to skyrocket, Charlie Gordon, a middle-aged man with an intellectual disability, is thrilled to be the first human to have the same surgery. At first, Charlie’s intellectual growth mirrors Algernon’s and reaches beyond genius levels, but eventually, Algernon’s intelligence begins to deteriorate, hinting at ominous results for Charlie. This science-fiction story is an important commentary on the morality of how we treat people with mental disabilities.

7. Still Alice by Lisa Genova Still Alice

At age 50, Alice Howland is in the prime of life. She’s happily married, has a wonderful family and is an accomplished university professor of cognitive psychology. Gradually, she notices herself becoming more and more disoriented and forgetful, and is soon diagnosed with early-onset Alzheimer’s. This haunting portrayal of a tragic disease is told from Alice’s point of view, meaning that readers experience her loss of sense of self as she endures it. Still Alice is now a major motion picture starring Julianne Moore, who is nominated for an Academy Award for Best Lead Actress.

Don't Stop the Music 8. Don’t Stop the Music by Robert Perske

Joe and Jessica, two teenagers with cerebral palsy, cannot speak and sometimes have difficulty connecting with the world around them — but that doesn’t stop them from delving into solving a car-theft case and eventually becoming key elements in cracking it. Written with warmth and humor, this fast-paced thriller is a refreshing portrayal of people with disabilities having a positive impact on their community.

 

The Running Dream 9. The Running Dream by Wendelin Van Draanen

Jessica’s one and only passion is running. So when she loses her right leg from the knee down following a near-fatal accident, she feels directionless and lost, like she’s surrounded by a heavy fog that won’t fade away. Though hesitant to accept her new life with a prosthetic, she’s slowly encouraged by family, her track teammates and, in particular, her burgeoning friendship with Rosa, who has cerebral palsy.

Owning It 10. Owning it: Stories About Teens With Disabilities edited by Donald Gallo

This compilation of short stories centers on teens with a variety of physical, intellectual and emotional disabilities. Subject matter ranges from a student who cannot stop barking at his classmates, to the creative way one teen with cancer survives his hospital room, to what it’s like inside the mind of a high schooler with ADD. Moving, uplifting and well-written, this collection is a necessary read for young adults with disabilities who feel alone or discouraged.

Any good ones we missed? Let us know in the comments.

Check out 10 more books about disease and disability here, and 10 insightful memoirs about what it’s like to live with autism here.

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About That Kid in the Dirty Shirt…

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As an education major in college, I came in contact with children in numerous arenas. One of my college jobs was at a daycare that mostly served people with a limited income. When parents dropped their kids off with dirty shirts and faces, I would look at those children and make a few assumptions. One was that their parents were too poor to afford extra changes of clothes when their kid’s clothes got dirty. Another was that the parents didn’t care enough about their kid to take the time to wipe their face or change their shirt.

Of course now, as a parent myself, I have a different perspective. To illustrate, I will give you a glimpse of breakfast in my house.

The house is a loud, anxiety-filled tornado until the older two leave to get on the bus and Daddy leaves for work. Then things calm a little. I make my coffee (I’m not a morning person) and try to figure out what Kyle and his brother will find acceptable to eat that morning. On one particular morning, I chose to heat up French toast I’d made the day before.

Kyle’s French toast was made with gluten-free bread. He seemed interested but after a sniff or two, tossed it across the table. It landed on the ground. I asked him to get down and pick it up and said I would make him some instant oatmeal. He obliged. I made the oatmeal, and while it cooked I tried putting his baby brother, “Mr. S.,” in his high chair, but he screamed and struggled so I let him roam free.

When the oatmeal was ready I served it to Kyle and managed to get Mr. S. in his high chair to eat some cut-up French toast. He settled quickly. Kyle slowly pushed the oatmeal away, and I was oh-so-grateful that he chose not to dump it on the floor (big strides!). Thus food choice #2 was a bust. I sat down and ate my French toast and Kyle’s oatmeal while he sat food-less. I felt satisfied that I didn’t have to wipe up any spilled milk or oatmeal that morning but dejected that I still hadn’t found something Kyle would eat.

I noticed a box of cereal bars on the table so I offered one to Kyle. Here was the result:

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These are the reasons why I often send my kid to school with a dirty face, shirt and pants — breakfast takes so much of my energy just to get my kid to eat, I’m often too physically and emotionally exhausted to go upstairs and get him a new shirt. If his pants are dirty, it would require removing his shoes to change them, so I don’t. If his face is dirty, I probably did my best to wipe it, but sometimes it’s not worth the struggle. If I changed his shirt when it got messy, he would go through three or four shirts every day. And I really don’t have the energy to do laundry that often.

So the kid with the dirty shirt? That’s my kid. I love him immensely, and I can afford to buy him lots of shirts. But you have to pick your battles.

This post originally appeared on for elysium

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When Our Physical Education Teacher Taught My Daughter an Unexpected Lesson

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Smith When my daughter, Natalie, was in second grade, she was still unable to say her name. She’d pronounce it “NaNaNee.”

For the past couple of years, I’ve had to hear several teachers tell me they struggle to get her to say it right. One day, I went to help out with a class party in Natalie’s mainstream class. In the middle of the party, her then DAPE (developmentally adaptive physical education) teacher, Nancy, came in and asked me to follow her and Natalie.

She took Natalie to a staircase and showed me how my daughter could now correctly climb them. I was thrilled. But that wasn’t the most amazing part.

Nancy told Natalie to show me the big surprise. Natalie climbed the stairs, one foot at a time, and said a syllable of her name on each step… “Nat, A, Lee. Nat, A, Lee.”

She could say her name!

It was amazing, and it wasn’t long before she could say it without the steps. It just goes to show you that you never know who is going to teach your kids what.

For all of February, The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Models With Disabilities Stun in Beautiful and Inclusive Runway Show

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There has been some groundbreaking inclusion at this year’s New York Fashion Week. After Jamie Brewer became the first model with Down syndrome to take the catwalk last Thursday, the weekend brought even more much-needed diversity to the event.

Fashion design company and modeling agency FTL Moda, in partnership with Fondazione Vertical, an Italian research foundation for spinal cord injuries, wowed audiences yesterday with the show “FTL Moda Loving You.”

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The show put well-known fashion models beside some stunning models with disabilities. Among them was male model, renowned British personal trainer and Men’s Health magazine’s Man of the Year, Jack Eyers.

I just want to show that having a disability doesn’t need to hold you back,” Eyers said, according to Today.

Antonio Urzi, the fashion designer behind the show, has had his creations worn by Beyonce’, Lady Gaga, Jennifer Lopez, Rihanna and Britney Spears, according to the FTL Moda press release.

“It is a very significant moment in my fashion career, this opportunity to finally open the most recognized runways in the world to these beautiful talents, ready to show that disability is very often just a mental state by performing on the runway next  to some of the best models on the scene.” Ilaria Niccolini, the producer of the show, said in a press release.

See some highlights of the show in the video below: 

 

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The Unexpected ER Trip That Finally Got Me Living

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At 48, my mom was diagnosed with breast cancer and had a mastectomy. That was over 30 years ago. Back then there were few answers about her prognosis. I spent a lot of time worrying she would die. As years went by, growing research indicated that factors raised my own risk. 

I went on to have three children and, like many parents, I worried about their safety and health. In the back of my mind, I worried who would take care of my children if I were to get breast cancer. 

But this story isn’t about breast cancer. It’s about something I never worried about, something that kills more people annually than breast cancer, AIDS and motor vehicle accidents combined

One day I developed lower back pain that wouldn’t go away. The pain started radiating down my left leg, which became numb and swollen.

The ER doctor told me I had an extensive blood clot, and the deep vein thrombosis (DVT) could become a Pulmonary Embolism (PE). Sudden death is the first symptom in about one-quarter of people who have a PE. They started treatment immediately. After two failed surgical attempts, the third worked, and 18 inches of titanium stent was placed.

The doctor diagnosed me with a factor V Leiden and May-Thurner syndrome. I had two vascular stenting surgeries and am on Coumadin for life. There’s no knowing how many times the vein can be re-stented. I precisely calibrate my dose of Coumadin between too much, which can cause a hemorrhage — and too little, which can cause a clot.

So, what have I learned? All those years I spent anxious were wasted moments. Worry has no control over what happens or doesn’t happen. Every day brings every one of us risks and challenges. That is life.

When things do go wrong, we can only face our challenges one moment at a time and do the best we can. Worrying about things before we have to face them doesn’t help a thing. And so much of what we worry about never happens; it only steals our joy in the moment.

So, the next time you are worried about the possibility of something happening, make the choice to live in the moment. Find joy in the moment. 

Lorilyn Geiger

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