On February 16, 2003, readers of The New York Times Magazine came upon Harriet McBryde Johnson's cover story, "Unspeakable Conversations," and a remarkable image of her gazing directly at those readers from her power wheelchair.  Her story memorably recounts her uncompromising, yet civil disagreements with Utilitarian philosopher Peter Singer about nothing less than the value of her life.  That narrative essay is one of eleven stories published in Too Late to Die Young.

They make the case that philosophers and others have incorrectly imagined Johnson's life, and the lives of others with chronic and disabling conditions, as burdensome and not worth living.  Born with a degenerative neuromuscular disease, Johnson grew up in a family that appreciated her; she practiced law in her native Charleston, South Carolina, and became nationally known for her disability activism.  Still, she encountered a world filled with people who feared her condition.  Fear, she found, led them to assume that disability inevitably brings suffering and to use that assumption to justify acts that would prevent her birth.

Her stories, conversationally and often humorously, ask readers to question why they burden some people with calls to justify their lives or to assure the world that they experience pleasure.  Each story recounts an episode that reveals the pleasures Johnson experienced as an active agent in the world.  She ran for a county office, represented her state at a Democratic National Convention, stood her ground for free speech and against Secret Service tactics when President Reagan spoke at her law school, protested Labor Day Week-end telethons, traveled to Cuba to cover a disability conference for a magazine, advocated for clients in employment discrimination cases, and made many, many friends.

Feeling exhilarated rather than confined by her wheelchair, she bears witness, perhaps unexpectedly, to another pleasure:  "the simple delight of movement."  She writes of maneuvering around Charleston, "I zoom through chaotic swarms of tourists, zip around the raggedy sidewalks . . . loop around every inconveniently placed garbage can, with maximum speed and also with style and grace" (252).  But her stories also describe her wheelchair stumbling over incompatible surfaces, one of which sends her to an emergency room far from home.  This episode also brings moments of grace, this time with the ER staff.  After learning who she is, they Google her on-line profiles and writings.  Delighting in their patient with unpredictable needs, they place print-outs of her electronic portfolio in her chart.


People living with disabling conditions often complain that when professional caregivers and bioethicists inaccurately imagine the lives of the disabled, their healthcare and sometimes their lives are at risk.  Too Late to Die Young offers counter-stories to such negative perceptions, which can lead to sending the disabled into what Johnson calls "the disability gulag" of nursing homes or withholding maximal care or disregarding their voices in clinical settings (194).  "Unspeakable Conversations" remains a compelling essay, one which should be included in teaching the empathic practice of medicine and in policy or bioethics discussions pertaining to disability.  Also especially useful is "Honk If You Hate Telethons."  There Johnson points out the often unintended bigotry toward the disabled, and the concurrent elevation of the non-disabled, that seemingly charitable acts can produce.  This disclosure is relevant since physicians and medical researchers often appear in telethons and other disability directed fund-raising events.

"Getting Thrown," another essay especially pertinent to medicine, begins with the complications of traveling in a wheelchair, by air and on land, and ends with an emergency room admission.  At first Johnson battles the standard protocols for an ER patient, to which she must plead exceptions.  As she writes, "Here, my body doesn't get what I want unless the medical people get what they want" (187).   However, she, her sister, who serves as travel companion and healthcare aide, and the staff mentioned above amicably negotiate Johnson's needs, giving her something she's "never encountered in a hospital: professional solicitude and respect" (191).

 Johnson's book also confronts the untimely predictions of her death that she and other children with neuromuscular diseases hear, especially from the telethons.  She writes about "being a little girl who knows she will die" and right from kindergarten pursues an educated, engaged life as she accepts that knowledge (7).  That she lived, as her title reminds us, decades beyond childhood--she died at age fifty in 2008-suggests the value of her engagements.

Of course, many readers will argue that not everyone with a disability promotes its acceptance, as Johnson does, rather than a cure.  Nor does everyone pursuing a cure think that doing so is as ethically disturbing or injurious to the self as Johnson does.  However, Harriet McBryde Johnson offers an important account of the experience of living with a disability.  Her personal stories argue urgently for social justice and remind medical caregivers that her interpretation of the experience of being human matters.

NOTE: As a search term, the keyword "illness narrative/pathography" helps
readers identify the most inclusive list of memoirs in the Database that are
written from the perspective of those living with a disease, illness,
impairment, or disability.  However, such inclusiveness is not meant to suggest that these four terms are interchangeable and we recognize that many in the disability community challenge the medical model of disability.


First published in 2005 by Henry Holt.


Picador/Henry Holt

Place Published

New York


2006 (paperback)

Page Count