Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine


Michele Lent Hirsch - 2018
    She did.Sophie navigates being the only black scientist in her lab while studying the very disease, HIV, that she hides from her coworkers.For Victoria, coming out as a transgender woman was less difficult than coming out as bipolar.Author Michele Lent Hirsch knew she couldn't be the only woman who's faced serious health issues at a young age, as well as the resulting effects on her career, her relationships, and her sense of self. What she found while researching Invisible was a surprisingly large and overlooked population with important stories to tell.Though young women with serious illness tend to be seen as outliers, young female patients are in fact the primary demographic for many illnesses. They are also one of the most ignored groups in our medical system--a system where young women, especially women of color and trans women, are invisible.And because of expectations about gender and age, young women with health issues must often deal with bias in their careers and personal lives. Not only do they feel pressured to seem perfect and youthful, they also find themselves amid labyrinthine obstacles in a culture that has one narrow idea of womanhood.Lent Hirsch weaves her own harrowing experiences together with stories from other women, perspectives from sociologists on structural inequality, and insights from neuroscientists on misogyny in health research. She shows how health issues and disabilities amplify what women in general already confront: warped beauty standards, workplace sexism, worries about romantic partners, and mistrust of their own bodies. By shining a light on this hidden demographic, Lent Hirsch explores the challenges that all women face.

Disability Visibility: First-Person Stories from the Twenty-first Century


Alice WongChristie Thompson - 2020
    Some disabilities are visible, others less apparent—but all are underrepresented in media and popular culture. Now, just in time for the thirtieth anniversary of the Americans with Disabilities Act, activist Alice Wong brings together this urgent, galvanizing collection of contemporary essays by disabled people.From Harriet McBryde Johnson’s account of her debate with Peter Singer over her own personhood to original pieces by authors like Keah Brown and Haben Girma; from blog posts, manifestos, and eulogies to Congressional testimonies, and beyond: this anthology gives a glimpse into the rich complexity of the disabled experience, highlighting the passions, talents, and everyday lives of this community. It invites readers to question their own understandings. It celebrates and documents disability culture in the now. It looks to the future and the past with hope and love.

Sitting Pretty: The View from My Ordinary Resilient Disabled Body


Rebekah Taussig - 2020
    None of this felt right; and as she got older, she longed for more stories that allowed disability to be complex and ordinary, uncomfortable and fine, painful and fulfilling.Writing about the rhythms and textures of what it means to live in a body that doesn’t fit, Rebekah reflects on everything from the complications of kindness and charity, living both independently and dependently, experiencing intimacy, and how the pervasiveness of ableism in our everyday media directly translates to everyday life.Disability affects all of us, directly or indirectly, at one point or another. By exploring this truth in poignant and lyrical essays, Taussig illustrates the need for more stories and more voices to understand the diversity of humanity. Sitting Pretty challenges us as a society to be patient and vigilant, practical and imaginative, kind and relentless, as we set to work to write an entirely different story.

Care Work: Dreaming Disability Justice


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

Body Talk: 37 Voices Explore Our Radical Anatomy


Kelly Jensen - 2020
    Just as every person has a unique personality, every person has a unique body, and every body tells its own story.   In Body Talk, thirty-seven writers, models, actors, musicians, and artists share essays, lists, comics, and illustrations—about everything from size and shape to scoliosis, from eating disorders to cancer, from sexuality and gender identity to the use of makeup as armor. Together, they contribute a broad variety of perspectives on what it’s like to live in their particular bodies—and how their bodies have helped to inform who they are and how they move through the world.   Come on in, turn the pages, and join the celebration of our diverse, miraculous, beautiful bodies!

What Doesn't Kill You: A Life with Chronic Illness - Lessons from a Body in Revolt


Tessa Miller - 2021
    At first, she toughed it out through searing pain, taking sick days from work, unable to leave the bathroom or her bed. But when it became undeniable that something was seriously wrong, Miller gave in to family pressure and went to the hospital—beginning a yearslong nightmare of procedures, misdiagnoses, and life-threatening infections. Once she was finally correctly diagnosed with Crohn’s disease, Miller faced another battle: accepting that she will never get better.Today, an astonishing three in five adults in the United States suffer from a chronic disease—a percentage expected to rise post-Covid. Whether the illness is arthritis, asthma, Crohn's, diabetes, endometriosis, multiple sclerosis, ulcerative colitis, or any other incurable illness, and whether the sufferer is a colleague, a loved one, or you, these diseases have an impact on just about every one of us. Yet there remains an air of shame and isolation about the topic of chronic sickness. Millions must endure these disorders not only physically but also emotionally, balancing the stress of relationships and work amid the ever-present threat of health complications.Miller segues seamlessly from her dramatic personal experiences into a frank look at the cultural realities (medical, occupational, social) inherent in receiving a lifetime diagnosis. She offers hard-earned wisdom, solidarity, and an ultimately surprising promise of joy for those trying to make sense of it all.

Being Heumann: An Unrepentant Memoir of a Disability Rights Activist


Judith Heumann - 2020
    From fighting to attend grade school after being described as a "fire hazard" to later winning a lawsuit against the New York City school system for denying her a teacher's license because of her paralysis, Judy's actions set a precedent that fundamentally improved rights for disabled people.As a young woman, Judy rolled her wheelchair through the doors of the US Department of Health, Education, and Welfare in San Francisco as a leader of the Section 504 Sit-In, the longest takeover of a governmental building in US history. Working with a community of over 150 disabled activists and allies, Judy successfully pressured the Carter administration to implement protections for disabled peoples' rights, sparking a national movement and leading to the creation of the Americans with Disabilities Act.Candid, intimate, and irreverent, Judy Heumann's memoir about resistance to exclusion invites readers to imagine and make real a world in which we all belong.

Disfigured: On Fairy Tales, Disability, and Making Space


Amanda Leduc - 2020
    After all, the ogre never gets the princess. And since fairy tales are the foundational myths of our culture, how can a girl with a disability ever think she'll have a happy ending?By examining the ways that fairy tales have shaped our expectations of disability, Disfigured will point the way toward a new world where disability is no longer a punishment or impediment but operates, instead, as a way of centering a protagonist and helping them to cement their own place in a story, and from there, the world. Through the book, Leduc ruminates on the connections we make between fairy tale archetypes—the beautiful princess, the glass slipper, the maiden with long hair lost in the tower—and tries to make sense of them through a twenty-first-century disablist lens. From examinations of disability in tales from the Brothers Grimm and Hans Christian Andersen through to modern interpretations ranging from Disney to Angela Carter, and the fight for disabled representation in today's media, Leduc connects the fight for disability justice to the growth of modern, magical stories, and argues for increased awareness and acceptance of that which is other—helping us to see and celebrate the magic inherent in different bodies.

[Don't] Call Me Crazy


Kelly JensenStephanie Kuehn - 2018
    Because there’s no single definition of crazy, there’s no single experience that embodies it, and the word itself means different things—wild? extreme? disturbed? passionate?—to different people. (Don’t) Call Me Crazy is a conversation starter and guide to better understanding how our mental health affects us every day. Thirty-three writers, athletes, and artists offer essays, lists, comics, and illustrations that explore their personal experiences with mental illness, how we do and do not talk about mental health, help for better understanding how every person’s brain is wired differently, and what, exactly, might make someone crazy. If you’ve ever struggled with your mental health, or know someone who has, come on in, turn the pages, and let’s get talking.

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.

Demystifying Disability: What to Know, What to Say, and How to Be an Ally


Emily Ladau - 2021
    But many of us–disabled and non-disabled alike–don’t know how to act, what to say, or how to be an ally to the disability community. Demystifying Disability is a friendly handbook on important disability issues you need to know about, including: • How to appreciate disability history and identity • How to recognize and avoid ableism (discrimination toward disabled people) • How to be mindful of good disability etiquette • How to appropriately think, talk, and ask about disability • How to ensure accessibility becomes your standard practice, from everyday communication to planning special events • How to identify and speak up about disability stereotypes in mediaAuthored by celebrated disability rights advocate, speaker, and writer Emily Ladau, this practical, intersectional guide offers all readers a welcoming place to understand disability as part of the human experience.

Far from the Tree: Parents, Children, and the Search for Identity


Andrew Solomon - 2012
    He writes about families coping with deafness, dwarfism, Down's syndrome, autism, schizophrenia, or multiple severe disabilities; with children who are prodigies, who are conceived in rape, who become criminals, who are transgender. While each of these characteristics is potentially isolating, the experience of difference within families is universal, and Solomon documents triumphs of love over prejudice in every chapter.All parenting turns on a crucial question: to what extent should parents accept their children for who they are, and to what extent they should help them become their best selves. Drawing on ten years of research and interviews with more than three hundred families, Solomon mines the eloquence of ordinary people facing extreme challenges.Elegantly reported by a spectacularly original and compassionate thinker, Far from the Tree explores how people who love each other must struggle to accept each other—a theme in every family’s life.

What My Mother and I Don't Talk About: Fifteen Writers Break the Silence


Michele Filgate - 2019
    It took her more than a decade to realize what she was actually trying to write: how this affected her relationship with her mother. When it was finally published, the essay went viral, shared on social media by Anne Lamott, Rebecca Solnit, and many others. The outpouring of responses gave Filgate an idea, and the resulting anthology offers a candid look at our relationships with our mothers. While some of the writers in this book are estranged from their mothers, others are extremely close. Leslie Jamison writes about trying to discover who her seemingly perfect mother was before ever becoming a mom. In Cathi Hanauer’s hilarious piece, she finally gets a chance to have a conversation with her mother that isn’t interrupted by her domineering (but lovable) father. André Aciman writes about what it was like to have a deaf mother. Melissa Febos uses mythology as a lens to look at her close-knit relationship with her psychotherapist mother. And Julianna Baggott talks about having a mom who tells her everything. As Filgate writes, “Our mothers are our first homes, and that’s why we’re always trying to return to them.” There’s relief in breaking the silence. Acknowledging what we couldn’t say for so long is one way to heal our relationships with others and, perhaps most important, with ourselves. Contributors include Cathi Hanauer, Melissa Febos, Alexander Chee, Dylan Landis, Bernice L. McFadden, Julianna Baggott, Lynn Steger Strong, Kiese Laymon, Carmen Maria Machado, André Aciman, Sari Botton, Nayomi Munaweera, Brandon Taylor, and Leslie Jamison.

The Good Immigrant: 26 Writers Reflect on America


Nikesh Shukla - 2019
    In this much-anticipated follow-up to the bestselling UK edition, hailed by Zadie Smith as "lively and vital," editors Nikesh Shukla and Chimene Suleyman hand the microphone to an incredible range of writers whose humanity and right to be here is under attack. Chigozie Obioma unpacks an Igbo proverb that helped him navigate his journey to America from Nigeria.Jenny Zhang analyzes cultural appropriation in 90s fashion, recalling her own pain and confusion as a teenager trying to fit in.Fatimah Asghar describes the flood of memory and emotion triggered by an encounter with an Uber driver from Kashmir.Alexander Chee writes of a visit to Korea that changed his relationship to his heritage.These writers, and the many others in this singular collection, share powerful personal stories of living between cultures and languages while struggling to figure out who they are and where they belong. By turns heartbreaking and hilarious, troubling and uplifting, the essays in The Good Immigrant come together to create a provocative, conversation-sparking, multivocal portrait of America now.

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.