LIVING WITH QUIGGLES
1) The recognition of difference based on some distinguishing characteristic or mark;
2) A consequent devaluation of the person
Quiggles: A made-up term (by famous sociologist, Erving Goffman) to identify all of the variations and differences of the human body which occur either from birth, daily wear and tear, accident, or illness which can be, and will be stigmatized.
Adjusting to a stigmatized medical condition happens, in all likelihood, in a series of phases perhaps not unlike those described by Elizabeth Kubler-Ross when she put forth her ideas about the process of death and dying. Goffman in his study of stigma suggests that there indeed is such a process: “the stigmatized individual can come to feel that he should be above passing, that if he accepts himself and respects himself he will feel no need to conceal his failing”. However, Goffman then goes on to write that many people (who may even be priding themselves on having made the adjustment to their stigmatizing condition) aren’t even aware that they may be doing something called covering.
Covering is basically making an effort to keep a stigma from looming so large that the person can’t sustain spontaneous involvement in a social interaction without the interaction’s content suddenly focusing on the stigmatized condition. For instance, a person who can get around best with a wooden peg might be covering by choosing to use crutches or an artificial limb when in society in order to make others more comfortable. Or someone who is blind might be covering by wearing dark glasses to cover the scars which are a mark of the accident which caused their blindness.
People whose stigmatizing condition is well known may still engage in covering behavior in order to minimize the obtrusiveness of their stigma. For example, someone who is hard of hearing may engage in several strategies so that a social evening will come off without a hitch, strategies such as sitting next to someone at dinner who has a strong voice; pretending to choke or cough if asked a direct question which they could not hear; or asking their fellow guests only questions to which they already know the answers.
Another way in which to cover is by trying to restrict the display of “failings.” For instance, someone with a vision loss might hesitate to read in front of friends or family because they have to hold the book a few inches from their eyes, even though “everyone” knows about their vision loss.
Many years ago when the sequel to Jaws hit the market I seem to remember (hopefully correctly) that advertisements for the film said something like “just when you thought it was safe to go back into the water.” For me, discovering the concept of “covering” was just like the shark reappearing at the Eastern seashore - yet another insidious behavior of which I was totally unaware has come sneaking up.
Personally I thought I was doing pretty well in the process, at least I was no longer telling off perfect strangers who came out of the blue to ask what was “wrong” with me. Then two things happened at once, I discovered the academic concept of covering while studying stigma the exact same week that, while at a friend’s home (who happens to be my rehabilitation physician), she remarked in passing that until we’d started to do activities together she had no idea how much impact Quiggles had in my life. As the kids say today - “well, dah”. I must admit the idea “keep the friend but change the physician” crossed my mind until I realized the obvious; I’d been unconsciously doing what Goffman refers to as covering.
Examining one self and how one relates to owning a Quiggle appears to be an ongoing process, a little like pealing back the layers of an onion – tears and all. Is it no wonder that the public has no idea how to respond to individuals with discernible Quiggles? If we Quiggle-owners spend so much energy passing, or covering, strangers we meet in passing (no pun intended) probably have a right to be completely confused as to how to behave.
I’m not suggesting we give up the fight to defeat stigma in healthcare, but perhaps we might also give some thought to what someone once wrote: “Life is not about waiting for the storm to pass; it’s about learning to dance in the rain.”