The Quiet Room: A Journey Out of the Torment of Madness


Lori Schiller - 1994
    Six years later she made her first suicide attempt, then wandered the streets of New York City dressed in ragged clothes, tormenting voices crying out in her mind. Lori Schiller had entered the horrifying world of full-blown schizophrenia. She began an ordeal of hospitalizations, halfway houses, relapses, more suicide attempts, and constant, withering despair. But against all odds, she survived. Now in this personal account, she tells how she did it, taking us not only into her own shattered world, but drawing on the words of the doctors who treated her and family members who suffered with her.In this new edition, Lori Schiller recounts the dramatic years following the original publication -- a period involving addiction, relapse, and ultimately, love and recovery.Moving, harrowing, and ultimately uplifting, THE QUIET ROOM is a classic testimony to the ravages of mental illness and the power of perseverance and courage.

The Two Kinds of Decay


Sarah Manguso - 2008
    In this captivating story, Manguso recalls her struggle: arduous blood cleansings, collapsed veins, multiple chest catheters, depression, the deaths of friends and strangers, addiction, and, worst of all for a writer, the trite metaphors that accompany prolonged illness. A book of tremendous grace, The Two Kinds of Decay transcends the very notion of what an illness story can and should be.

The Undying


Anne Boyer - 2019
    For a single mother living paycheck to paycheck who had always been the caregiver rather than the one needing care, the catastrophic illness was both a crisis and an initiation into new ideas about mortality and the gendered politics of illness.A twenty-first-century Illness as Metaphor, as well as a harrowing memoir of survival, The Undying explores the experience of illness as mediated by digital screens, weaving in ancient Roman dream diarists, cancer hoaxers and fetishists, cancer vloggers, corporate lies, John Donne, pro-pain ”dolorists,” the ecological costs of chemotherapy, and the many little murders of capitalism. It excoriates the pharmaceutical industry and the bland hypocrisies of ”pink ribbon culture” while also diving into the long literary line of women writing about their own illnesses and ongoing deaths: Audre Lorde, Kathy Acker, Susan Sontag, and others.A genre-bending memoir in the tradition of The Argonauts, The Undying will break your heart, make you angry enough to spit, and show you contemporary America as a thing both desperately ill and occasionally, perversely glorious.

Stigma: Notes on the Management of Spoiled Identity


Erving Goffman - 1963
    Disqualified from full social acceptance, they are stigmatized individuals. Physically deformed people, ex-mental patients, drug addicts, prostitutes, or those ostracized for other reasons must constantly strive to adjust to their precarious social identities. Their image of themselves must daily confront and be affronted by the image which others reflect back to them.Drawing extensively on autobiographies and case studies, sociologist Erving Goffman analyzes the stigmatized person’s feelings about himself and his relationship to “normals” He explores the variety of strategies stigmatized individuals employ to deal with the rejection of others, and the complex sorts of information about themselves they project. In Stigma the interplay of alternatives the stigmatized individual must face every day is brilliantly examined by one of America’s leading social analysts.

Brilliant Imperfection: Grappling with Cure


Eli Clare - 2017
    It saves lives, manipulates lives, and prioritizes some lives over others. It provides comfort, makes profits, justifies violence, and promises resolution to body-mind loss. Clare grapples with this knot of contradictions, maintaining that neither an anti-cure politics nor a pro-cure worldview can account for the messy, complex relationships we have with our body-minds.The stories he tells range widely, stretching from disability stereotypes to weight loss surgery, gender transition to skin lightening creams. At each turn, Clare weaves race, disability, sexuality, class, and gender together, insisting on the nonnegotiable value of body-mind difference. Into this mix, he adds environmental politics, thinking about ecosystem loss and restoration as a way of delving more deeply into cure.Ultimately Brilliant Imperfection reveals cure to be an ideology grounded in the twin notions of normal and natural, slippery and powerful, necessary and damaging all at the same time.

Care Work: Dreaming Disability Justice


Leah Lakshmi Piepzna-Samarasinha - 2018
    Powerful and passionate, Care Work is a crucial and necessary call to arms.

In the Realm of Hungry Ghosts: Close Encounters with Addiction


Gabor Maté - 2007
    Diligently treating the drug addicts of Vancouver's notorious Downtown Eastside with sympathy in his heart and legislative reform in mind can't be easy. But Maté never judges. His book is a powerful call-to-arms, both for the decriminalization of drugs and for a more sympathetic and informed view of addiction. As Maté observes, "Those whom we dismiss as 'junkies' are not creatures from a different world, only men and women mired at the extreme end of a continuum on which, here or there, all of us might well locate ourselves." In the Realm of Hungry Ghosts begins by introducing us to many of Dr. Maté's most dire patients who steal, cheat, sell sex, and otherwise harm themselves for their next hit. Maté looks to the root causes of addiction, applying a clinical and psychological view to the physical manifestation and offering some enlightening answers for why people inflict such catastrophe on themselves.Finally, he takes aim at the hugely ineffectual, largely U.S.-led War on Drugs (and its worldwide followers), challenging the wisdom of fighting drugs instead of aiding the addicts, and showing how controversial measures such as safe injection sites are measurably more successful at reducing drug-related crime and the spread of disease than anything most major governments have going. It's not easy reading, but we ignore his arguments at our peril. When it comes to combating the drug trade and the ravages of addiction, society can use all the help it can get. --Kim Hughes

Ask Me About My Uterus: A Quest to Make Doctors Believe in Women's Pain


Abby Norman - 2018
    She was repeatedly hospitalized in excruciating pain, but the doctors insisted it was a urinary tract infection and sent her home with antibiotics. Unable to get out of bed, much less attend class, Norman dropped out of college and embarked on what would become a years-long journey to discover what was wrong with her. It wasn't until she took matters into her own hands--securing a job in a hospital and educating herself over lunchtime reading in the medical library--that she found an accurate diagnosis of endometriosis.In Ask Me About My Uterus, Norman describes what it was like to have her pain dismissed, to be told it was all in her head, only to be taken seriously when she was accompanied by a boyfriend who confirmed that her sexual performance was, indeed, compromised. Putting her own trials into a broader historical, sociocultural, and political context, Norman shows that women's bodies have long been the battleground of a never-ending war for power, control, medical knowledge, and truth. It's time to refute the belief that being a woman is a preexisting condition.

Sexual Citizens: A Landmark Study of Sex, Power, and Assault on Campus


Jennifer S. Hirsch - 2020
    Research has shown that by the time they graduate, as many as one in three women and almost one in six men will have been sexually assaulted. But why is sexual assault such a common feature of college life? And what can be done to prevent it? Drawing on the Sexual Health Initiative to Foster Transformation (SHIFT) at Columbia University, the most comprehensive study of sexual assault on a campus to date, Jennifer S. Hirsch and Shamus Khan present an entirely new framework that emphasizes sexual assault’s social roots—transcending current debates about consent, predators in a “hunting ground,” and the dangers of hooking up.Sexual Citizens is based on years of research interviewing and observing college life—with students of different races, genders, sexual orientations, and socioeconomic backgrounds. Hirsch and Khan’s landmark study reveals the social ecosystem that makes sexual assault so predictable, explaining how physical spaces, alcohol, peer groups, and cultural norms influence young people’s experiences and interpretations of both sex and sexual assault. Through the powerful concepts of “sexual projects,” “sexual citizenship,” and “sexual geographies,” the authors offer a new and widely-accessible language for understanding the forces that shape young people’s sexual relationships. Empathetic, insightful, and far-ranging, Sexual Citizens transforms our understanding of sexual assault and offers a roadmap for how to address it.

Born on a Blue Day: Inside the Extraordinary Mind of an Autistic Savant


Daniel Tammet - 2006
    Tammet's ability to think abstractly, deviate from routine, and empathize, interact and communicate with others is impaired, yet he's capable of incredible feats of memorization and mental calculation. Besides being able to effortlessly multiply and divide huge sums in his head with the speed and accuracy of a computer, Tammet, the subject of the 2005 documentary Brainman, learned Icelandic in a single week and recited the number pi up to the 22,514th digit, breaking the European record. He also experiences synesthesia, an unusual neurological syndrome that enables him to experience numbers and words as "shapes, colors, textures and motions." Tammet traces his life from a frustrating, withdrawn childhood and adolescence to his adult achievements, which include teaching in Lithuania, achieving financial independence with an educational Web site and sustaining a long-term romantic relationship. As one of only about 50 people living today with synesthesia and autism, Tammet's condition is intriguing to researchers; his ability to express himself clearly and with a surprisingly engaging tone (given his symptoms) makes for an account that will intrigue others as well.

The Center Cannot Hold: My Journey Through Madness


Elyn R. Saks - 2007
    She has managed to achieve this in spite of being diagnosed as schizophrenic and given a "grave" prognosis—and suffering the effects of her illness throughout her life.Saks was only eight, and living an otherwise idyllic childhood in sunny 1960s Miami, when her first symptoms appeared in the form of obsessions and night terrors. But it was not until she reached Oxford University as a Marshall Scholar that her first full-blown episode, complete with voices in her head and terrifying suicidal fantasies, forced her into a psychiatric hospital.Saks would later attend Yale Law School where one night, during her first term, she had a breakdown that left her singing on the roof of the law school library at midnight. She was taken to the emergency room, force-fed antipsychotic medication, and tied hand-and-foot to the cold metal of a hospital bed. She spent the next five months in a psychiatric ward.So began Saks's long war with her own internal demons and the equally powerful forces of stigma. Today she is a chaired professor of law who researches and writes about the rights of the mentally ill. She is married to a wonderful man.In The Center Cannot Hold, Elyn Saks discusses frankly and movingly the paranoia, the inability to tell imaginary fears from real ones, and the voices in her head insisting she do terrible things, as well as the many obstacles she overcame to become the woman she is today. It is destined to become a classic in the genre.

The Boy Who Couldn't Stop Washing: The Experience and Treatment of Obsessive-Compulsive Disorder


Judith L. Rapoport - 1989
    Another sufferer must check her stove hundreds of times daily to make sure she has turned it off. And one woman, in an effort to ensure that her eyebrows are symmetrical, finally plucks out every hair. All of these people are suffering from Obsessive-Compulsive Disorder (OCD), an emotionally debilitating sickness that afflicts up to six million Americans. Cleaning, counting, washing, avoiding, checking—these are some of the pointless rituals that sufferers are powerless to stop. Now a distinguished psychiatrist and expert on OCD reveals exciting breakthroughs in diagnosis, successful new behaviorist therapies and drug treatments, as well as lists of resources and references. Drawing on the extraordinary experiences of her patients, Dr. Judith Rapoport unravels the mysteries surrounding this irrational disorder . . . and provides prescriptions for action that promise hope and help.

In a Different Key: The Story of Autism


John Donvan - 2016
    Beginning with his family’s odyssey, In a Different Key tells the extraordinary story of this often misunderstood condition, and of the civil rights battles waged by the families of those who have it. Unfolding over decades, it is a beautifully rendered history of ordinary people determined to secure a place in the world for those with autism—by liberating children from dank institutions, campaigning for their right to go to school, challenging expert opinion on what it means to have autism, and persuading society to accept those who are different.  It is the story of women like Ruth Sullivan, who rebelled against a medical establishment that blamed cold and rejecting “refrigerator mothers” for causing autism; and of fathers who pushed scientists to dig harder for treatments. Many others played starring roles too: doctors like Leo Kanner, who pioneered our understanding of autism; lawyers like Tom Gilhool, who took the families’ battle for education to the courtroom; scientists who sparred over how to treat autism; and those with autism, like Temple Grandin, Alex Plank, and Ari Ne’eman, who explained their inner worlds and championed the philosophy of neurodiversity. This is also a story of fierce controversies—from the question of whether there is truly an autism “epidemic,” and whether vaccines played a part in it; to scandals involving “facilitated communication,” one of many treatments that have proved to be blind alleys; to stark disagreements about whether scientists should pursue a cure for autism. There are dark turns too: we learn about experimenters feeding LSD to children with autism, or shocking them with electricity to change their behavior; and the authors reveal compelling evidence that Hans Asperger, discoverer of the syndrome named after him, participated in the Nazi program that consigned disabled children to death.<

The Collected Schizophrenias: Essays


Esmé Weijun Wang - 2019
    Schizophrenia is not a single unifying diagnosis, and Esme Weijun Wang writes not just to her fellow members of the "collected schizophrenias" but to those who wish to understand it as well. Opening with the journey toward her diagnosis of schizoaffective disorder, Wang discusses the medical community's own disagreement about labels and procedures for diagnosing those with mental illness, and then follows an arc that examines the manifestations of schizophrenia in her life. In essays that range from using fashion to present as high-functioning to the depths of a rare form of psychosis, and from the failures of the higher education system and the dangers of institutionalisation to the complexity of compounding factors such as PTSD and Lyme disease, Wang's analytical eye, honed as a former lab researcher at Stanford, allows her to balance research with personal narrative. An essay collection of undeniable power, The Collected Schizophrenias dispels misconceptions and provides insight into a condition long misunderstood.

Feminist, Queer, Crip


Alison Kafer - 2013
    Challenging the ways in which ideas about the future and time have been deployed in the service of compulsory able-bodiedness and able-mindedness, Kafer rejects the idea of disability as a pre-determined limit. She juxtaposes theories, movements, and identities such as environmental justice, reproductive justice, cyborg theory, transgender politics, and disability that are typically discussed in isolation and envisions new possibilities for crip futures and feminist/queer/crip alliances. This bold book goes against the grain of normalization and promotes a political framework for a more just world.