D. Joy Riley, M.D., M.A.
How do we treat the vulnerable among us? Ghost Boy, by Martin Pistorius with Megan Lloyd Davies, is an excellent book to help us explore this question.
Martin Pistorious was a 12-year-old South African school boy when he became ill in 1988. Over the next year, he became wheelchair bound and mute, and spent much of his time over the next 14 years in institutions. That is not the end of the story, however, and he, with Megan Lloyd Davies, tells the story of his awakening and subsequent life in Ghost Boy (Nashville, TN: Nelson Books, 2013).
Martin’s inability to walk hindered him, and he could not use his arms to feed or clean himself. But these deficiencies paled in comparison to his inability to speak. “Not having a voice to say I’d had enough food or the bath water was too hot or to tell someone I loved them was the thing that made me feel most inhuman. Words and speech separate us from the animal kingdom, after all. They give us free will and agency as we use them to express our desires and refuse or accept what others want us to do. Without a voice, I couldn’t control even the simplest things . . .” (p. 79).
Without a voice, Martin could not control more complicated things, either. He was sexually abused by a number of women. One of his “carers” terrorized him particularly: “Nothing made me feel more powerless than waiting for her to come for me again. . . . I knew I couldn’t stop her or speak out. I was just an unresponsive object that she used as and when she wanted, the blank canvas onto which she painted her black appetites” (pp. 156-7).
There was, however, another carer who was worthy of the title. She thought she perceived understanding in Martin’s eyes. He was evaluated, and her suspicions turned out to be true. Martin began his long journey back to fuller participation in communal life. He learned to communicate using a computer, and by age twenty-eight, had taught himself to read and write. He found employment, and friends. He also found a wife in Joanna, beautiful inside-and-out, whom he married in 2009.
It is through Joanna’s eyes that we have a new appreciation for Martin. He writes, “She has told me that the pleasure I take in things is one of the greatest joys I give her. She says that she has never seen anyone revel in things as much as I do, and it makes her happy to see that the world astounds me so often because there are almost as many new things as there are ways to experience joy” (p. 232).
Martin asked Joanna why she loves him. She answered him thusly:
Because you are a good, kind man who is unlike anyone I’ve ever known. . . . Because you’re intelligent and thoughtful, warm and wise. Because you love so completely and have taught me to slow down and take notice of a world that I’ve spent so long rushing past (p 238).
Martin Pistorius did not write a book about bioethics, but his book can teach us much. When he was without a voice, he felt defenseless. He was ignored by many, and abused by some. Similarities exist with the proposed three-parent embryos or other embryos of ambiguous parentage, as well as the elderly or infirm who may be pressured toward physician-assisted suicide. All are human beings in vulnerable situations. Those who might desire self-harm need not our cooperation, but our love and company. The importance of community cannot be overstated.
Vulnerable human beings can be ignored or abused. Abuse of dependent persons may be difficult to discover. Like Joanna, we need to slow down and take notice of what is happening around us. Rushing past the ethical concerns in these areas — for whatever reason — is a sure path to folly.
