Jan Grue

This is not a story about survival. It is not about how I became a human, but rather how I came to understand that I already was human. I am writing about everything I wanted and how I came to be in possession of it. I am writing about what this cost me, and how I was able to afford it. This is an attempt to write off the language of others . . . I began writing because I needed a language different from the one available to me. Jan Grue was diagnosed with spinal muscular atrophy at the age of three. Shifting between specific periods of his life—his youth with his parents and sister in Norway; his years of study in Berkeley, St. Petersburg, and Amsterdam; and his current life as a professor, husband, and father—he intersperses these histories with elegant, astonishingly wise reflections on the world, social structures, disability, loss, relationships, and the body: in short, on what it means to be human. Along the way, Grue moves effortlessly between his own story and those of others, incorporating reflections on philosophy, film, art, and the work of writers from Joan Didion to Michael Foucault. He revives the cold, clinical language of his childhood, drawing from a stack of medical records that first forced the boy who thought of himself as “just Jan” to perceive that his body, and therefore his self, was defined by its defects. When the Child Was a Child is a love story. It is rich with loss, sorrow, and joy, and with the details of one life: a girlfriend pushing Grue through the airport and forgetting him next to the baggage claim; schoolmates forming a chain behind his wheelchair on the ice one winter day; his parents writing desperate letters in search of proper treatment for their son; his own young son climbing into his lap as he sits in his wheelchair, only to leap down and run away too quickly to catch. It is a story about accepting one’s own body and limitations, and learning to love life as it is while remaining open to hope and discovery.

A Record of My Body

When the Child Was a Child

Hvis jeg faller

en levnetsbeskrivelse

Jeg lever et liv som ligner deres

‘Superb... up-ends received wisdom about disability... Humbling, dark, bright, defiant, generous... revolutionary’ David Mitchell, author of Cloud Atlas A profoundly beautiful memoir about disability, difference, and living as a vulnerable body Jan Grue had just become a father when he inherited a stack of his childhood medical records. Following a diagnosis of spinal muscular atrophy at the age of three, the raft of doctors’ notes, clinical descriptions and case histories defined his body as defective and his future as bleak and limited. They conjured a childhood nothing like the one he remembered, that failed to anticipate the life he lived now. I Live a Life Like Yours is Grue’s beautiful, groundbreaking search for a literary language that could better tell his story. Writing with clear-eyed wisdom and bracing frankness, Grue folds insights from art, film and literature into an expansive account of who he was expected to be, and who he became. If it is a story of frustration with negligent institutions and the pain of stigma, it is also a story of the potential of acceptance and the gift of family. Unflinching, yet always compassionate, I Live a Life Like Yours is a fierce and tender reckoning with what it means to live as a vulnerable body.

A Memoir

I Live a Life Like Yours

Disability studies has engaged with discourse analysis in key works both from the UK and the USA. While the perspectives and analyses of discourse analysis have proved well suited for exploring disability, however, its methods have not been sufficiently developed in a disability studies context. Conversely, discourse analysts have traditionally been concerned with social issues and fields in which asymmetric power relations, marginalization, and discrimination play a central role, e.g. gender, race, ethnicity, and sexual orientation, all of which share many analytical features with disability. But although efforts have been made to integrate disability into the discourse analysis and conversation analysis canon, the link between the two fields needs to be strengthened. This ground-breaking volume contributes to this link by thoroughly applying the analytical vocabulary of discourse analysis to issues that are central to the field of disability studies. It strengthens disability studies by supplying case studies of representations and constructions of disability and disabled people in discourse, theorizes the role played by language in the social construction of disability, and makes disability a more salient topic for discourse analysts.

Disability and Discourse Analysis

"A quietly brilliant book that warms slowly in the hands." —Dwight Garner, The New York Times I am not talking about surviving. I am not talking about becoming human, but about how I came to realize that I had always already been human. I am writing about all that I wanted to have, and how I got it. I am writing about what it cost, and how I was able to afford it. Jan Grue was diagnosed with spinal muscular atrophy at the age of three. Shifting between specific periods of his life—his youth with his parents and sister in Norway; his years of study in Berkeley, St. Petersburg, and Amsterdam; and his current life as a professor, husband, and father—he intersperses these histories with elegant, astonishingly wise reflections on the world, social structures, disability, loss, relationships, and the body: in short, on what it means to be human. Along the way, Grue moves effortlessly between his own story and those of others, incorporating reflections on philosophy, film, art, and the work of writers from Joan Didion to Michael Foucault. He revives the cold, clinical language of his childhood, drawing from a stack of medical records that first forced the boy who thought of himself as “just Jan” to perceive that his body, and therefore his self, was defined by its defects. I Live a Life Like Yours is a love story. It is rich with loss, sorrow, and joy, and with the details of one life: a girlfriend pushing Grue through the airport and forgetting him next to the baggage claim; schoolmates forming a chain behind his wheelchair on the ice one winter day; his parents writing desperate letters in search of proper treatment for their son; his own young son climbing into his lap as he sits in his wheelchair, only to leap down and run away too quickly to catch. It is a story about accepting one’s own body and limitations, and learning to love life as it is while remaining open to hope and discovery.

Jan Grue

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