This is what the Twelve Tables—the first written code of law among the Romans (449 B.C.)—has to say about what to do with a “deformed child”:
Cito necatus insignis ad deformitatem puer esto.
An obviously deformed child must be put to death.
The Latin words deformitas means “ugliness,” “disfigurement,” “blemish.” While I am not sure if “deformity” so defined was equated with disability—if by this we mean a physical as well as cognitive or intellectual disability—among the Romans, but I think this sense can, to some extent, be inferred. “Let there be a law that no deformed child shall be reared,” wrote the fourth century Greek philosopher Aristotle in his Politics. Indeed, as one contemporary philosopher notes, “During most of human experience, children like Ashley were abandoned to become prey to wolves and jackals.”
The contemporary philosopher cited here is Princeton University Professor of Bioethics at the Center for Human Values, Peter Singer. According to his website, there are “three easy ways to make a difference“:
- Do something for the world’s poorest people.
- Do something for animals.
- Do something for our planet’s environment.
More succinctly, give to Oxfam, become a vegan, ride a bike, if I may offer some simple paraphrases of the three points above.
But what about children like Ashley, the now 9-year-old Seattle area girl whose parents, fearing how to take care of her as she grew older and bigger, had doctors perform “the Ashley Treatment,” in which her uterus and breast buds were removed and estrogen given to her over the past two years to, as Time magazine notes, “keep her small”? Easier to “make a difference” (as one might infer from Singer’s “three easy ways“) by helping the “wolves and jackals,” the animals, whom “children like Ashley” were once abandoned to.
Singer wrote about Ashley in A Convenient Truth, an op-ed in the January 26th New York Times. Since Singer is infamous for arguing that severely disabled infants ought to be killed (see Taking Life: Humans (1993), it is not surprising that he thinks Ashley’s parents did the right thing. The treatment was carried out in her “best interest,” Singer writes in answering the objections of critics to what some have referred to the mutilation of a young girl. Noting that Ashley’s parents have written on their blog that “her treatment is not for their convenience but to improve her quality of life,” Singer writes:
….. it is also true that the line between improving Ashley’s life and making it easier for her parents to handle her scarcely exists, because anything that makes it possible for Ashley’s parents to involve her in family life is in her interest.
I am not so sure of how “true” the two points Singer makes here are. As the mother of a disabled child, my son Charlie, it is the case that he relies more than heavily on my husband Jim and me, just as Ashley is wholly dependent on others, and in particular her parents, for her care. But I do not see how “making it easier for her parents to handle her” can be so quickly equated with “improving Ashley’s life”—the changes to Ashley’s body would seem to have been performed primarily for the sake of her parents’ “lifestyle choices, as Jim writes in Peter Singer’s Pillow Angel. I am not entirely sure how a “smaller” Ashley can be equated with involving her more in family life, as Singer does not specify what he means (perhaps he is suggesting that this “smaller” Ashley might more easily be transported from place to place, so that she might have access to more family activities?). I can say, and with surety, that it is possible for a family to change what it understands to be “family life” in order to accommodate, to best provide for, the needs of a disabled child, whether moving out of one’s own house and into one’s elderly, and disabled, in-laws’ basement so that that disabled child can attend a school that best suits him, or choosing to engage in activities that best suit a disabled child’s abilities and preferences.
What stands out to me most about Singer’s sympathetic defense of Ashley’s parents in A Convenient Truth is the curious ways in which he refers to Ashley as compared to how he refers to animals (those wolves and jackals again). Singer rejects the argument that the treatment impugns Ashley’s dignity by noting that, while “we are always ready to find dignity in human beings, including those whose mental age will never exceed that of an infant,” we make no such rush to attribute such dignity to dogs or cats “though they clearly operate at a more advanced mental level than human infants.” As Singer notes in his “three easy ways to make a difference,” “Do something for animals”—-and do what you have to do disabled human beings to make handling them “easier.” Dogs and cats (and those aforementioned wolves and jackals) ought to have dignity attributed to them, but Ashley—a severely disabled, and now permanently stunted, child, “she is precious”:
What matters in Ashley’s life is that she should not suffer, and that she should be able to enjoy whatever she is capable of enjoying. Beyond that, she is precious not so much for what she is, but because her parents and siblings love her and care about her.
“She is precious” because she is loved (note the use of the passive voice) by others, but not in and of herself, but not she is herself, Ashley, a 9-year-old girl who lives in the Seattle area and who was born in the same year as my son Charlie. Again, Singer curiously, and rather messily, blurs the boundaries (the “line” referred to earlier) between Ashley and her parents; indeed, it would seem that there is no line at all due to the extent (as Singer notes) of her disability, and, most of all, to her having a mental capacity that “will never exceed that of an infant” or, as Singer himself notes, of a dog or cat.
Singer’s reference to Ashley as “precious” occurs in the final paragraph of his op-ed and is just one sign, I think, of a breakdown of the seemingly tough-minded, carefully reasoned, stance that A Convenient Truth draws on in defense of Ashley’s parents’ decisions. Having based his case on how little mental capacity, and how little of a self, Ashley has, Singer can only summon up one sentimentalizing (if not maudlin) adjective to describe Ashley: She is “precious,” a word that in its sweetness (rather out of character for what one expects in reading Singer’s works) recalls an adjective he uses in a previous paragraph, in referring to 3-month-old babies as “adorable” (the context is Singer’s mentioning that he is both a parent and grandparent). These words—”precious” and “adorable”—stand out to me because they are two words that I constantly hear applied to Charlie when people (relatives, strangers, all apparently well-meaning) do not know what to say in the face of a tall 9-year-old boy who frequently babbles like a baby: “He must be so precious to you. He is so adorable!”
Such words would not so readily, of course, be applied to “typical” 9-year-old boys and Jim and I try always to address and to treat Charlie as the 9-year-old child he is (as Ashley is). Those who tell me, in Charlie’s presence, that “he” is “precious” and “adorable,” however well-intentioned their remarks, are speaking about Charlie as if he does not understand. As if he lacks the mental capacity to understand. As if, due to the unusual neurological wiring of his brain, he cannot, will not understand.
When I first heard about the Ashley treatment and the removal of some parts of her body for the sake of her “quality of life” and her being “comfortable,” I wondered if some might apply such reasoning to say that, well, since autistic persons’ brains are wired abnormally, maybe it would help them “not suffer” as much if we removed…….
I am not going to finish that thought.
I am going to suggest a fourth “easy way” to make a difference, and it really is very easy.
When you have the opportunity to spend some time with a disabled child, just do it. Just sit down in the same room with them; just be, and be with them. The child may be lying there, still; the child may be racing around the room in waves of hyperness and making noises and not responding to a single word you say. You cannot know how much or what of your presence they are absorbing; you cannot assume that they are, just as you cannot presume that they are not.
Just as we cannot assume that, because we no longer abandon deformed infants in the wilds to the wolves and the jackals, that we have come so far from the times of the fifth-century Romans and the stern laws inscribed upon the Twelve Tables.