Like many people, the members of the Special Needs Alliance enjoy reading a good book. What makes reading a good book even better is discussing it afterwards with fellow members. Twice a year, our book club selects a book. It may be fiction or non-fiction, but each book touches on some aspect of disability. The group discussion is always interesting and connects us on another level. One of the lessons from COVID has been that book discussions are always better when we’re in person in the same room. Whether you are part of a book group or just enjoy reading, we want to share our book selections with you and will continue to update this list as we continue to read. Let us know if you have books that you’d recommend for a future book group discussion. We’re always looking for a good next read!
Napa, CA—Spring 2023: Methemoglobinemia
The Last Blue by Isla Morley (2020)
The Last Blue is a love story told from the perspective of the protagonists, Jubilee, a young, sheltered woman from deep in the hills of Kentucky and Havens, a world-travelled photographer sent to Kentucky to capture photographs of Appalachians “who are on times hard enough to use a little government assistance but not hard enough as to be beyond all help,” on behalf of President Roosevelt’s Farm Security Administration. Jubilee is one of the “Blue People.” She has a genetic condition called methemoglobinemia, in which a deficiency of the enzyme diaphorase results in an oxygen deficiency in the red blood cells. This causes the blood to appear brown, which in turn makes the skin appear blue. We know now (since about 1964) that the condition can be treated with methylene blue. Taken daily, it changes skin to the “right colored skin” as the Blue People call it in the book.
In isolated Appalachia in the early part of the 20th century, neither the Blue People themselves, nor the townspeople, understood why Jubilee and her brother Levi had blue skin. They did not know there were Blue People in other parts of the country, nor did they know the condition had a name and a cure. Were they possessed by the devil? Was it contagious? It led to fear amongst the townspeople who felt free to bully, harass, batter, and even kill Blue People without consequence.
When Havens and Jubilee meet, he is immediately entranced by her beauty. She, however, keeps him at arms-length, distrustful of him and his camera, because of her blue skin. She is afraid that if pictures of her, her brother Levi, and other Blue People of Kentucky are published, it will lead to more discrimination and violence.
The book raises questions discussed often in the disability world: if you could take a pill every morning so that you could be “typical,” would you take the pill? Would “the cure” change you–your essence? Would you know how to live in the world as “typical?” Would your loved ones want you to take the pill? What about your neighbors and those who had judged and persecuted you and your ancestors for generations? And can people who are not typical have passionate and wonderful love lives?
There are two love stories in the book: one between Jubilee and Havens and the other between Jubilee’s brother Levi and the reverend’s daughter, Sarah. Jubilee and Levi are Blue People and Havens and Sarah are “right colored.” Jubilee has never felt desirable or understood, and is convinced she’ll never feel either, until she meets Havens and the two are eventually brought together by a love of nature. Levi and Sarah’s love story brings the simmering tensions in the town to a boil; seeing the harassment and violence Blue People endured, readers understand why Jubilee eventually decides to take methylene blue. Jubilee realizes that not being blue won’t make her happy. She reflects, “I thought if I could just look like everyone else, everything would be okay, but I took those pills and ended up feeling lost in my own self. I’m formed around blue, and there’s no pill for that.” The Last Blue is a love story, but its essence is a story about identity, prejudice, and the importance of telling our own stories.
Stetson – Fall 2022: Advocacy
Being Heumann: An Unrepentant Memoir of a Disability Rights Activist by Judith Heumann (2020)
An autobiography by Judith Heumann of her life as an advocate and a person living with a disability due to getting polio at 18 months. Judith’s story is compelling from the first chapter where she describes herself as a little girl playing with the other kids in her neighborhood. She in her wheelchair, accepted by her peers as one of them. If a physical barrier presented itself, the kids would figure out a way so Judith could participate in whatever activity was happening. It wasn’t until she became school age that Judith started experiencing different treatment. That’s when the advocacy work began. First by her mother, then later by Judith herself.
Judith’s story continues as she describes her personal life and advocacy work over decades. Her advocacy efforts contributed to the passage of Section 504, and the Americans with Disabilities Act. She led a sit-in at the San Francisco based US Department of Health, Education and Welfare, which was described as the longest takeover of a government building in US history. When the government officials attempted to starve out Judith and the other protestors, groups like the Black Panthers snuck in food and supplies to support the protesters. The sit in was to pressure legislators to enact 504 regulations.
Judith’s fight was always for inclusion. Inclusion for her and for others. I found her story to be not preachy, but inspirational. The need for inclusion continues. We are reminded almost daily that we are not there yet.
It’s the kind of story that stays with you long after you finish, and you wish you knew what happens next. If you haven’t read it please consider it. You will be lifted and hopefully inspired.
Savannah, GA—Spring 2022: ALS
Every Note Played by Lisa Genova (2018)
An 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.
Karina had 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. Poignant and powerful, Every Note Played is a masterful exploration of redemption and what it means to find peace inside of forgiveness.
Spring 2021 Virtual Meeting: Autism
A Long Walk Down a Winding Road: Small Steps, Challenges, and Triumphs Through an Autistic Lens by Sam Farmer (2019)
Written from the perspective of someone living on the autism spectrum, A Long Walk Down a Winding Road offers clear advice and simple steps for overcoming adversity and improving your life. Growing up, Sam Farmer contended with challenges many of us face. He was bullied, faced difficulties around self-awareness and social skills, and struggled to build self-esteem. At the age of forty, he received a life-altering diagnosis of Asperger’s syndrome. In spite of initial feelings of frustration and confusion, he learned to embrace his newfound “Aspie” profile, recognizing that doing so would ultimately pave the way toward acquiring self-love. Farmer has written this book in order to share his ideas and insights learned along the winding road of his life. The stories and wisdom shared will inspire and empower everyone to help themselves achieve happier, more productive lives. By emphasizing the importance of a broader acceptance of autism and arguing why it should not be thought of as a disorder, Farmer illustrates how society can greatly benefit from showing an understanding of people who are different.
Virtual—Fall 2020: Hearing/Visual Impairement
Haben: The Deafblind Woman Who Conquered Harvard Law by Haben Girma (2019)
Haben grew up spending summers with her family in the enchanting Eritrean city of Asmara. There, she discovered courage as she faced off against a bull she couldn’t see, and found in herself an abiding strength as she absorbed her parents’ harrowing experiences during Eritrea’s thirty-year war with Ethiopia. Their refugee story inspired her to embark on a quest for knowledge, traveling the world in search of the secret to belonging. She explored numerous fascinating places, including Mali, where she helped build a school under the scorching Saharan sun. Her many adventures over the years range from the hair-raising to the hilarious.
Haben defines disability as an opportunity for innovation. She learned non-visual techniques for everything from dancing salsa to handling an electric saw. She developed a text-to-braille communication system that created an exciting new way to connect with people. Haben pioneered her way through obstacles, graduated from Harvard Law, and now uses her talents to advocate for people with disabilities. Haben takes readers through a thrilling game of blind hide-and-seek in Louisiana, a treacherous climb up an iceberg in Alaska, and a magical moment with President Obama at The White House. Warm, funny, thoughtful, and uplifting, this captivating memoir is a testament to one woman’s determination to find the keys to connection.
Stetson—Fall 2019: Down Syndrome
Expecting Adam: A True Story of Birth, Rebirth, and Everyday Magic by Martha Beck (2000)
A national bestseller and an important reminder that life is what happens when you’re making other plans. This “rueful, riveting, piercingly funny” (Julia Cameron) book is written by a Harvard graduate–but it tells a story in which hearts trump brains every time. It’s a tale about mothering a Down syndrome child that opts for sass over sap, and it’s a book of heavenly visions and inexplicable phenomena that’s as down-to-earth as anyone could ask for. This small masterpiece is Martha Beck’s own story–of leaving behind the life of a stressed-out super achiever, opening herself to things she’d never dared consider, meeting her son for (maybe) the first time…and “unlearn[ing] virtually everything Harvard taught [her] about what is precious and what is garbage.”
Charleston, S.C.— Spring 2019: Autism
Carly’s Voice by Arthur Fleischmann (2012)
At the age of two, Carly Fleischmann was diagnosed with severe autism and an oral motor condition that prevented her from speaking. Doctors predicted that she would never intellectually develop beyond the abilities of a small child. Although she made some progress after years of intensive behavioral and communication therapy, Carly remained largely unreachable. Then, at the age of ten, she had a breakthrough.
While working with her devoted therapists Howie and Barb, Carly reached over to their laptop and typed in “HELP TEETH HURT,” much to everyone’s astonishment. This was the beginning of Carly’s journey toward self-realization. Although Carly still struggles with all the symptoms of autism, which she describes with uncanny accuracy and detail, she now has regular, witty, and profound conversations on the computer with her family, her therapists, and the many thousands of people who follow her via her blog, Facebook, and Twitter.
In Carly’s Voice, her father, Arthur Fleischmann, blends Carly’s own words with his story of getting to know his remarkable daughter. One of the first books to explore firsthand the challenges of living with autism, it brings readers inside a once-secret world and in the company of an inspiring young woman who has found her voice and her mission.
Stetson—Fall 2018: Down Syndrome
Census by Jesse Ball
When a widower receives notice from a doctor that he doesn’t have long left to live, he is struck by the question of who will care for his adult son—a son whom he fiercely loves, a boy with Down syndrome. With no recourse in mind, and with a desire to see the country on one last trip, the man signs up as a census taker for a mysterious governmental bureau and leaves town with his son. Traveling into the country, through towns named only by ascending letters of the alphabet, the man and his son encounter a wide range of human experience. While some townspeople welcome them into their homes, others who bear the physical brand of past censuses on their ribs are wary of their presence. When they press toward the edges of civilization, the landscape grows wilder, and the towns grow farther apart and more blighted by industrial decay. As they approach “Z,” the man must confront a series of questions: What is the purpose of the census? Is he complicit in its mission? And just how will he learn to say good-bye to his son?
San Diego, CA—Spring 2018: Congenital Neuromuscular Disease
Too Late to Die Young: Nearly True Tales from a Life by Harriet McBryde Johnson (2005)
Harriet McBryde Johnson isn’t sure, but she thinks one of her earliest memories was learning that she will die. The message came from a maudlin TV commercial for the Muscular Dystrophy Association that featured a boy who looked a lot like her. Then as now, Johnson tended to draw her own conclusions. In secret, she carried the knowledge of her mortality with her and tried to sort out what it meant. By the time she realized she wasn’t a dying child, she was living a grown-up life, intensely engaged with people, politics, work, struggle, and community.
Due to a congenital neuromuscular disease, Johnson has never been able to walk, dress, or bathe without assistance. With help, however, she manages to take on the world. From the streets of Havana, where she covers an international disability rights conference, to the floor of the Democratic National Convention in Chicago, to an auditorium at Princeton, where she defends her right to live against philosopher Peter Singer, she lives a life on her own terms. And along the way, she defies and debunks every popular assumption about disability.
Stetson—Fall 2017: Huntington’s Disease
Inside the O’Briens by Lisa Genova (2015)
Joe O’Brien is a forty-three-year-old police officer from the Irish Catholic neighborhood of Charlestown, Massachusetts. A devoted husband, proud father of four children in their twenties, and respected officer, Joe begins experiencing bouts of disorganized thinking, uncharacteristic temper outbursts, and strange, involuntary movements. He initially attributes these episodes to the stress of his job, but as these symptoms worsen, he agrees to see a neurologist and is handed a diagnosis that will change his and his family’s lives forever: Huntington’s disease.
Huntington’s is a lethal neurodegenerative disease with no treatment and no cure, and each of Joe’s four children has a 50 percent chance of inheriting their father’s disease. While watching her potential future in her father’s escalating symptoms, twenty-one-year-old daughter Katie struggles with the questions this test imposes on her young adult life. As Joe’s symptoms worsen and he’s eventually stripped of his badge and more, Joe struggles to maintain hope and a sense of purpose, while Katie and her siblings must find the courage to either live a life “at risk” or learn their fate.
Nashville, TN—Spring 2017: Treacher Collins Syndrome
Wonder by R.J. Palacio (2017)
August Pullman was born with a facial difference that, up until now, has prevented him from going to a mainstream school. Starting 5th grade at Beecher Prep, he wants nothing more than to be treated as an ordinary kid—but his new classmates can’t get past Auggie’s extraordinary face. The book begins from Auggie’s point of view, but soon switches to include his classmates, his sister, her boyfriend, and others. These perspectives converge in a portrait of one community’s struggle with empathy, compassion, and acceptance.
“Wonder is the best kids’ book of the year,” said Emily Bazelon, senior editor at Slate.com and author of Sticks and Stones: Defeating the Culture of Bullying and Rediscovering the Power of Character and Empathy. In a world where bullying among young people is an epidemic, this is a refreshing new narrative full of heart and hope. R.J. Palacio has called her debut novel “a meditation on kindness” —indeed, every reader will come away with a greater appreciation for the simple courage of friendship. Auggie is a hero to root for, a diamond in the rough who proves that you can’t blend in when you were born to stand out.
Stetson Fall 2016: Asperger’s
Love That Boy: What Two Presidents, Eight Road Trips and My Son Taught Me About Parent’s Expectations by Ron Fournier (2016)
Love That Boy is a uniquely personal story about the causes and costs of outsized parental expectations. What we want for our children—popularity, normalcy, achievement, genius—and what they truly need—grit, empathy, character—are explored by National Journal’s Ron Fournier, who weaves his extraordinary journey to acceptance around the latest research on childhood development and stories of other loving-but-struggling parents.
Honolulu, HI—Spring 2016: Leprosy
Moloka’I by Alan Brennert (2010)
Young Rachel Kalama, growing up in idyllic Honolulu in the 1890s, is part of a big, loving Hawaiian family, and dreams of seeing the far-off lands that her father, a merchant seaman, often visits. But at the age of seven, Rachel and her dreams are shattered by the discovery that she has leprosy. Forcibly removed from her family, she is sent to Kalaupapa, the isolated leper colony on the island of Moloka’i. In her exile she finds a family of friends to replace the family she’s lost: a native healer, Haleola, who becomes her adopted “auntie” and makes Rachel aware of the rich culture and mythology of her people; Sister Mary Catherine Voorhies, one of the Franciscan sisters who care for young girls at Kalaupapa; and the beautiful, worldly Leilani, who harbors a surprising secret. At Kalaupapa she also meets the man she will one day marry.
True to historical accounts, Moloka’i is the story of an extraordinary human drama, the full scope and pathos of which has never been told before in fiction. But Rachel’s life, though shadowed by disease, isolation, and tragedy, is also one of joy, courage, and dignity. This is a story about life, not death; hope, not despair. It is not about the failings of flesh, but the strength of the human spirit.
Lock In by John Scalzi (2014)
Not too long from today, a new, highly contagious virus makes its way across the globe. Most who get sick experience nothing worse than flu, fever and headaches. But for the unlucky one percent – and nearly five million souls in the United States alone – the disease causes “Lock In”: Victims fully awake and aware, but unable to move or respond to stimulus. The disease affects young, old, rich, poor, people of every color and creed. The world changes to meet the challenge.
A quarter of a century later, in a world shaped by what’s now known as “Haden’s syndrome,” rookie FBI agent Chris Shane is paired with veteran agent Leslie Vann. The two of them are assigned what appears to be a Haden-related murder at the Watergate Hotel, with a suspect who is an “integrator” – someone who can let the locked in borrow their bodies for a time. If the Integrator was carrying a Haden client, then naming the suspect for the murder becomes that much more complicated. As Shane and Vann began to unravel the threads of the murder, it becomes clear that the real mystery – and the real crime – is bigger than anyone could have imagined. The world of the locked in is changing, and with the change comes opportunities that the ambitious will seize at any cost. The investigation that began as a murder case takes Shane and Vann from the halls of corporate power to the virtual spaces of the locked in, and to the very heart of an emerging, surprising new human culture. It’s nothing you could have expected.
New Orleans, LA— Spring 2015
Confederacy of Dunces by John Kennedy Toole (1981)
A Confederacy of Dunces is an American comic masterpiece that outswifts Swift, whose poem gives the book its title. Set in New Orleans, the novel bursts into life on Canal Street under the clock at D. H. Holmes department store. The characters leave the city and literature forever marked by their presences–Ignatius and his mother; Mrs. Reilly’s matchmaking friend, Santa Battaglia; Miss Trixie, the octogenarian assistant accountant at Levy Pants; inept, bemused Patrolman Mancuso; Jones, the jivecat in spaceage dark glasses. Juvenal, Rabelais, Cervantes, Fielding, Swift, Dickens–their spirits are all here. Filled with unforgettable characters and unbelievable plot twists, shimmering with intelligence, and dazzling in its originality, Toole’s comic classic just keeps getting better year after year.
Austin, TX—Spring, 2014 – Asperger Syndrome, High-Functioning Autism/Savant Syndrome
The Curious Incident of the Dog in the Night Time by Mark Haddon (2003)
Christopher John Francis Boone knows all the countries of the world and their capitals and every prime number up to 7,057. He relates well to animals but has no understanding of human emotions. He cannot stand to be touched. And he detests the color yellow. Although gifted with a superbly logical brain, fifteen-year-old Christopher is autistic and everyday interactions and admonishments have little meaning for him. He lives on patterns, rules, and a diagram kept in his pocket. Then one day, a neighbor’s dog, Wellington, is killed and his carefully constructive universe is threatened. Christopher sets out to solve the murder in the style of his favorite (logical) detective, Sherlock Holmes. What follows makes for a novel that is deeply funny, poignant, and fascinating in its portrayal of a person whose curse and blessing are a mind that perceives the world entirely literally.
Stetson–Fall, 2013: PTSD
Until Tuesday: A wounded Warrior and the Golden Retriever who Saved Him by Captain Luis Maltalvan (2011)
A highly decorated captain in the U.S. Army, Luis Montalván never backed down from a challenge during his two tours of duty in Iraq. After returning home from combat, however, his physical wounds and crippling post-traumatic stress disorder began to take their toll. He wondered if he would ever recover. Then Luis met Tuesday, a sensitive golden retriever trained to assist the disabled. Tuesday had lived among prisoners and at a home for troubled boys, and he found it difficult to trust in or connect with a human being–until Luis. Until Tuesday is the story of how two wounded warriors, who had given so much and suffered the consequences, found salvation in each other. It is a story about war and peace, injury and recovery, psychological wounds and spiritual restoration. But more than that, it is a story about the love between a man and dog, and how, together, they healed each other’s souls.
Washington, D.C.—Spring, 2013: Manic Depression
Where are the Cocoa Puffs?: A Family’s Journey Through Bi-Polar Disorder by Karen Winters Schwartz (2010)
As eighteen-year-old Amanda spirals into mania, her father, psychiatrist Dr. Jerry Benson, sees the realization of his worst fears: his daughter is not just moody, but truly ill. With his words, his diagnosis–manic depressive illness–his world and that of his family is forever altered. Carol, Amanda’s mother, struggles with the guilt and shame of having raised a “crazy” daughter. Christy, Amanda’s fifteen-year-old sister, denies the illness; after all, my sister’s a bitch is so much easier to accept. Meanwhile, the Bensons’ extended family offers up everything from unconditional support to uncomfortable scrutiny as Amanda careens between bouts of frightening violence, cosmic euphoria, and suicidal despair. Then there’s Ryan, an architecture student who is initially ensnared by Amanda’s manic sexuality, but is ultimately captured and held throughout the chaos by the force of love and strength of family.
Where Are the Cocoa Puffs?: A Family’s Journey Through Bipolar Disorder follows a family through the tragedy of bipolar disorder, but it’s not tragic. It’s funny, sad, and thought provoking—and as real and as raw as mental illness itself.
Stetson—Fall, 2012: Bipolar Illness
60 Days to Sanity – A College Freshman’s Struggle to Overcome Mental Illness by Peter Barnes. (2011)
In the fall of 1989, I was a wide-eyed teenager bound for college. Less than a month later, I was fighting my way out of a padded room. Sixty Days to Sanity is neither a step-by-step guide nor a medical journal about the causes and effects of bipolar disorder. Sixty Days to Sanity is my best recollection of what happened, when at 18, my world was turned upside down by a severe manic episode and diagnosis of Bipolar I. The focus of this story is the human side of bipolar disorder and how these initial sixty days affected me and those close to me. It’s my hope that Sixty Days to Sanity can provide valuable insight to those coping with a diagnosis of bipolar disorder and those friends, families and professionals who are attempting to understand it.
San Antonio, TX—Spring 2012: Early Onset Alzheimer’s
Still Alice by Lisa Genova (2007)
Still Alice is about a 50-year-old woman’s sudden descent into early onset Alzheimer’s disease, written by first-time author Lisa Genova, who holds a Ph. D in neuroscience from Harvard University. I have multiple copies of this book in my office and give it to clients whose parents or spouses are in the throes of Alzheimer’s disease. It is amazingly accurate as it describes the descent into this most insidious disease.
Stetson—Fall, 2011 – Asperger’s Syndrome
House Rules by Jodi Picoult (2010)
House Rules is about Jacob Hunt, a teenage boy with Asperger’s Syndrome. He’s hopeless at reading social cues or expressing himself well to others, and like many kids with AS, Jacob has a special focus on one subject – in his case, forensic analysis. He’s always showing up at crime scenes, thanks to the police scanner he keeps in his room, and telling the cops what they need to do…and he’s usually right. But then one day his tutor is found dead, and the police come to question him. All of the hallmark behaviors of Asperger’s – not looking someone in the eye, stimulatory tics and twitches, inappropriate affect – can look a heck of a lot like guilt to law enforcement personnel — and suddenly, Jacob finds himself accused of murder. HOUSE RULES looks at what it means to be different in our society, how autism affects a family, and how our legal system works well for people who communicate a certain way – but lousy for those who don’t.
Scottsdale, AZ—Spring 2011: Epilepsy
The Spirit Catches You and You Fall Down by Anne Fadiman (1997)
The Spirit Catches You and You Fall Down explores the clash between a small county hospital in California and a refugee family from Laos over the care of Lia Lee, a Hmong child diagnosed with severe epilepsy. Lia’s parents and her doctors both wanted what was best for Lia, but the lack of understanding between them led to tragedy. Winner of the National Book Critics Circle Award for Nonfiction, the Los Angeles Times Book Prize for Current Interest, and the Salon Book Award, Anne Fadiman’s compassionate account of this cultural impasse is literary journalism at its finest.
Stetson—Fall 2011: Brain Injury
A Three Dog Life by Abigail Thomas (2006)
When Abigail Thomas’s husband, Rich, was hit by a car, his brain shattered. Subject to rages, terrors, and hallucinations, he must live the rest of his life in an institution. He has no memory of what he did the hour, the day, the year before. This tragedy is the ground on which Abigail had to build a new life. How she built that life is a story of great courage and great change, of moving to a small country town, of a new family composed of three dogs, knitting, and friendship, of facing down guilt and discovering gratitude. It is also about her relationship with Rich, a man who lives in the eternal present, and the eerie poetry of his often uncanny perceptions. This wise, plainspoken, beautiful book enacts the truth Abigail discovered in the five years since the accident: You might not find meaning in disaster, but you might, with effort, make something useful of it.
San Diego, CA–Spring, 2010: Down Syndrome
Jewel by Bret Lott (1991)
With five healthy children, the Hilburns were happy and believed life would continue in a slow-paced Mississippi way. But when Jewel and Leston’s sixth is born a “Mongolian Idiot,” as the New Orleans doctor declared, their life changes and Jewel leads her family on a journey to California that will bring all manner of hardship and joy.