The Weird Was Made Flesh and Dwelt Among Us
When a child is born, a quick inventory of his or her fingers and toes serves as our first assessment of "normalcy." People struggle for words to express the audacity of Nature should she deviate from her own laws. Health team members’ eyes weigh heavily on the parents. "Admit it,” they seem to say, "he’ll never play the piano.”
My son was born with a hand deformity that was crudely referred to as a "lobster claw” by an OB nurse. The textbooks that doctors and medical specialists reference in these cases (and they always refer to textbooks in these cases) attribute my son’s hand deformity to "an accident of nature, not inherited, but an inherent part of the evolutionary process.”1 Most parents are not looking for a explanation as much as they are looking for an answer to the question "Will my child fit in?”
In order to provide an ethical answer to the question "Will my child fit in?” medical specialists need to acquire a whole new understanding of "normalcy.” The definition of normalcy is currently based on scientific comparisons of statistically collected "norms” of form and function. An ethics-based definition of "normalcy” goes beyond empirically measured relationships of form and function. Neglecting an ethics-based approach to understanding "normalcy” can lead to false associations between physical appearance and ability, or even worse, moral character. Dr. Adrian E. Flatt, author of a definitive text on congenital hand deformities wrote, "Some individuals cannot reconcile themselves to their obvious deformity and develop antisocial behavior that may progress to frank delinquency.”2
Medical prognoses that do not incorporate an ethical perspective cannot provide the complete picture because the prognosis will always be limited by a mechanistic view of the patient. Whereas a care provider’s practice of medicine may be limited by a mechanistic view, the patient’s ability to compensate for a mechanical deformity is not limited. Simply Google® "Kevin Michael Connolly” or "Nadia Miller” or "Jessica Cox” or "Mark Goffeney” or "Nick Newell” or any of the thousands of others who disproved medical prognoses and limited mechanistic definitions of "normalcy.” When the individual patient’s perspective is ignored, medicine can only produce a limited view of reality.
The scientific misconception is that, even if a statistical norm could be assimilated by averaging data from thousands of individuals, the "norm” is a mere caricature of a human being – something like an animated character in the movie Avatar. Although a computer model may be able to describe individual motor unit function during finger and hand movement, in producing even the simplest movement, a real flesh-and-blood hand has an infinite number of motor unit arrays that can result in the same movement. Just as a chess player can only make sense of his opponent’s moves by relating them to a coherent strategy, the motions of the hand make sense only by assimilating them to some coherent purpose.
Enter medical ethics, the discussion of right and wrong relative to purpose and meaning for the patient. Take the human hand: when viewed as a machine, it is a very complex system. Even amongst the "normal” population, it is clear that no two hands have identical joints, muscles, nerves, and blood vessels. Understanding this as the natural order, my son’s hand begins to look less weird; and, an ethical reorientation to the medical prognosis for his hand could include a subjective appreciation for its purpose, such as - to gain knowledge through movement. This is as true for my son’s hand as it is for the rest of his body.
The question, "Will my child fit in?” reflects concern about living in a society designed for statistically derived "norms.” Yesterday, my son was challenged by shoestrings and monkey bars; tomorrow, he may be challenged by piano keyboards and baseball gloves. But, don’t we all face different challenges? For me, it is walking on icy sidewalks. The older I get, the slower and more deliberately I must learn to walk. The slower I move, the more I see my feet as if they were things, separate from myself, foreign and not normal. In this way, our physical constraints may actually contribute to self-knowledge, growth and enlightenment – all positive aspects of an ethically-based medical prognosis. The weird was made flesh…and it is us.
- Flatt Adrian, E. The care of congenital hand anomalies. St Louis, MO; Quality Medical Publishing, Inc.: 1994: p. 48.
- Ibid, p. 5.
Holub P. The Weird Was Made Flesh and Dwelt Among Us. The Internet Journal of Allied Health Sciences and Practice. 2013 Apr 01;11(2), Article 2.