Longstanding societal ignorance about spinal cord injury has led to widely-held attitudes that paralysis results in lower quality of life. Many people still think quadriplegia is equivalent to a death sentence. This attitude has even been used as justification for ending lives, as when Michael Hickson, a 46-year-old quad with a wife and five children, presented with COVID-19 in 2020. A Texas physician refused to treat him, saying Hickson’s quality of life did not warrant saving him — even though he had never seen Hickson as a patient prior to his hospital admittance, had never seen him in his home, had never seen how he interacts with his wife and children and didn’t know him. Hickson died after life-saving treatment was refused.
In 2003, Harriet McBryde Johnson, a disability rights attorney and activist in Charleston, South Carolina, rolled into the public eye to debate Peter Singer, a famous bioethics professor at Princeton University, about quality-of-life issues. Singer, best-known for supporting animal rights, had recently proposed that parents had an ethical right to euthanize their disabled infants, and in some cases, young children. Humans, not animals. He claimed that children born with severe disabilities were doomed to live lives of lower quality. Their very existence increased unhappiness in the world. Killing them would make room for new, healthy, happy lives, increasing the total amount of happiness. Therefore, allowing parents to do this was “ethical.” His views were widely accepted as worthy of debate.
Johnson, a power chair user whose body was contorted by a severe form of muscular dystrophy from birth, was known to be a brilliant thinker and writer. She lived a full, productive life and was influential in her community. In her essay describing the debate, “Unspeakable Conversations,” published in the Feb. 16, 2003 issue of New York Times Magazine, she begins: "He insists he doesn't want to kill me. He simply thinks it would have been better, all things considered, to have given my parents the option of killing the baby I once was, and to let other parents kill similar babies as they come along and thereby avoid the suffering that comes with lives like mine and satisfy the reasonable preferences of parents for a different kind of child. …” Her essay led to her acclaimed book, Too Late to Die Young, which Kirkus Reviews called “A remarkable portrait of a woman who is proof that the disabled can live lives filled with purpose and pleasure.”
The Solution: Living Our Lives