“Living With Quiggles” has covered a wide range of stigma issues such as the impact of staring; how language stigmatizes; the decision to attempt to “pass” in society by keeping a health challenge or disability hidden; the reactions when the birth of a baby brings an unexpected Quiggle into a family; and many other subtle issues of stigma in healthcare.
For the most part we’ve explored stigmatization as it applies to strangers who connect briefly as they stumble upon one another while going about their daily lives. But how does one handle stigma when the dynamics become more personal and the relationships closer? How do our egos interfere?
In 2003 The Simon Foundation for Continence organized an international conference on Defeating Stigma in Healthcare. One of the papers presented, authored by two psychologists from the University of Michigan (Julie A. Garcia and Jennifer Crocker), explored stigma experienced in closer, more personal interactions. Following are excerpts from their abstract and conclusions of the presentation, entitled “Stigma and Self-Esteem from Two Sides: Managing Devalued Identities in Social Interactions”. (The full text of the paper appeared in the Journal of Wound, Ostomy and Continence Nursing Feb 2005.)
ABSTRACT: When stigmatized and non-stigmatized people interact with one another, both experience threats to self-esteem, but for different reasons. For the stigmatized, they may experience self-esteem decrements because they feel that their group is devalued in the eyes of others. On the other hand, non-stigmatized others may fear that their actions will be perceived as biased, thereby threatening their self-image as an unprejudiced person. These fears manifest themselves in different ways. Fearing rejection and disapproval, the stigmatized may engage in defensive strategies such as withdrawal from contact with potential stigmatizers, heightened vigilance for signs of possible rejection, or attempts to conceal their stigma, if possible. When stigmatized people are vigilant for rejection, they are more likely to perceive and then accuse the other of prejudice or blame themselves because they feel that they deserved the negative feedback. Non-stigmatized others may try to inhibit or suppress expression of prejudice which paradoxically makes acting in a biased manner more likely to occur. Thus, both the stigmatized and non-stigmatized act in ways that make their worst fears more likely to come true.
CONCLUSION: The great discomfort that stigmatized and non-stigmatized people feel when interacting with each other is, in the final analysis, about ego. Each is afraid of being devalued, being wrong, being accused, or being inferior. These experiences are painful for our ego, but they do not represent real dangers to our well-being unless we let them. Our egos want to see us as the victim, and the other person as the perpetrator. But we are all both a victim and a perpetrator when we are driven by our egos.
The solution, we have argued, lies in finding goals that are not driven by our ego. Goals about what we can learn; what relationship we want to create; or what we want to build or contribute that is larger than the self; all can provide the way out of the destructive cycles of interaction between the stigmatized and stigmatizer. They can help us to create trust, to find our common ground, and together to make a difference in the world.
Interestingly enough it was during this very conference on Stigma in Healthcare that I experienced Garcia and Crocker’s concept personally. As one of the conference chairpersons, for months on end I’d been reading everything I could about stigma. But as the conference drew near I realized that I was becoming quite apprehensive regarding meeting one of the keynote speakers for the first time – James Partridge who was facially disfigured in a car accident and founded the British organization Changing Faces. Wasn’t this the height of irony – me the one who owns several Quiggles experiencing the other side of the Garcia/Crocker equation – living in fear of doing the wrong thing at the wrong time in the wrong place and thus becoming a stigmatizer.
Of course I’d seen people with facial disfigurements before, but now I was going to meet and work with someone who had this Quiggle. So, how do I act? Where exactly do I look upon greeting him for the first time? How do I succeed as a conference chairperson and make gracious introductions? As you can see, every thought I had was escalating the unease. And I note now in retrospect, every concern was about me even though I thought it was James whom I was considering. If only someone had told me then that “the great discomfort is, in the final analysis, about ego.”
And where did all this worry get me? Well, as my mother used to say – “don’t borrow trouble.” James breezed into the conference room, spotted and made a bee- line for me, kissed me on both cheeks like the Europeans are wont to do and immediately launched into a discussion about how excited he was to be a part of this groundbreaking conference – needless to say we’ve been great friends and colleagues ever since.
I’ve posed the question to you before, and I’m sure I’ll continue to do so again and again – whose responsibility is it to defeat stigma in healthcare? I believe the answer is wrapped-up in living ego-less. Just think what a world we could create living without egos whichever side of the equation we fall – possessing a Quiggle or interacting with a Quiggle-holder. In fact, forget about Quiggles for the moment and simply imagine the number of problems that would be solved if we could all live without our egos getting in the way.