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.