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Living With Quiggles

Cheryle Gartley explains the stigma attached to health conditions and how we can work together to help those who struggle with it everyday.

As you may already know, the United States population hit the 300 million mark recently.  What many Americans may not know, or even be able to estimate, is how many of our citizens were living with a Quiggle when the day arrived.

No, a Quiggle is not a fabulous new designer dog!   In fact, since you had an interest or at least some curiosity which led you to read this column, there's a good chance that you may unknowingly own a Quiggle and thus are a member of America's largest minority.  To most people's surprise our largest minority is not comprised of Hispanic or African Americans, but rather Americans with a disability (or for that matter, a chronic health condition) which may either be immediately apparent or undetectable at first meeting.

Most of this minority live each day with the challenge of what it means to be a Quiggle holder.  Quiggles is the term used by the famous sociologist, Erving Goffman.  Goffman started an intense academic focus on what he called "spoiled identity" which refers to living stigmatized.  Quiggles is the made-up name Goffman gave to identify all of the variations and differences of the human body which can occur either from birth, daily wear and tear, accidents, or illnesses which can be, and most likely will be, stigmatized.  Examples which lead a person to be stigmatized include: riding a chair for mobility; wearing orthopaedic devices; having a facial disfigurement; or acknowledging the presence of cancer or being HIV positive.

The textbook entitled The Social Psychology of Stigma defines stigma as:

     1. The recognition of difference based on some distinguishing characteristic or mark;

     2. A consequent devaluation of the person.  

There are many behavioral components of how we stigmatize, most of which happen in a public setting.  They include such behaviors as pointing, staring, name-calling, or the unexpected and inappropriate approach of a stranger to ask "What is wrong with you?”  However, stigma may also occur closer to home, such as family members’ reactions when an unexpected Quiggle arrives along with the birth of a new baby.

It is safe to say that a large number of individuals live with what Goffman called a "master stigma".  This is a stigma that potentially defines the "bearer" in the eyes of others.  Because so many health care problems are not concealable, health problems (along with disabilities) can and do "define" an individual.

Being a Quiggle holder myself, I can attest to the fact that Quiggles and stigma reside hand in hand and are a part of everyday life.   In fact, everywhere strangers meet or simply pass by there is ample opportunity for stigmatization (staring, pointing, double-takes, circling back in the shopping mall to get a better look, etc.).  Stigma is personally, interpersonally, and socially costly.  So the sooner we start to acknowledge what stigmatizing each other is doing is one day sooner we can get on with the task of defeating stigma in healthcare.

I believe that working together we can all do a part to stamp out stigma in healthcare before that 300 millionth person - the one who just landed on the planet in our neck of the woods - reaches school age; and there is no better time than the present to begin.  So please return often because I've lots of ideas and would also love for you to share your own effect measures which have worked for you so that we can all learn how to defeat stigma in healthcare in our lifetimes.

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