Stigma:
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 the famous sociologist, Erving Goffman) to identify all of the variations and difference of the human body which occur either from birth, daily wear and tear, accidents, or illness which can be, and will be, stigmatized.
It happens so quickly, similar to an accident, one minute you are just minding your own business out shopping, the next minute an absolute stranger is in your face asking "What's the matter with you?" I'm used to it; no let me rephrase that (you never get used to it) - it happens to me often. For instance yesterday, a woman observing my cane and orthopaedic footgear hit my "witchswitch" with just such an inquiry to which I shot back "Don't you think that's an incredibly rude question to ask a stranger?" What I really would have liked to have said was: "Did you flunk manners class in school just once or was it twice?" or "Did you have special training to be so obnoxious, or does it just come naturally?" I think you probably get the message; at that moment in time I was angry, tired, in pain, and sick-to-death of not being able to go about my shopping in the same manner that society permits this rude woman to do so. Remember the old childhood taunt - "Sticks and stones may break my bones but names will never hurt me"? Well personally I think they got it wrong and that those of us living with Quiggles have experienced language as hurtful.
Language is an important part of stigmatization. Dr. Rhonda Olkin in her book What Psychotherapists Should Know About Disability states: "embedded in PC (political correctness) language are social constructs and ideologies that are important to understand. Perhaps using an example can illustrate this point best. Think of the tremendous social and political changes that are implied by the terms "girls," "ladies," and "women"; to give another example, "colored," "negro," "black," and "African American." As we see in these examples, terminology both presages and mirrors important socio-political movements; it might even be argued that the changes in terminology reflect paradigm shifts."
To apply this line of thought to stigma in healthcare is easy. Listen very closely to "wheelchair bound" versus "rides a chair." Doesn't one description say helpless, poor thing, "There but for the grace of God go I?" While the other description, dare I say it, actually sounds like fun! Language can not only reflect, but can also create reality. The word "wrong" is a good example. Individuals with stigmatized health conditions or those who live with visible Quiggles are all too often asked by complete strangers, "What is wrong with your _________ " - just fill in leg, arm, nose, etc. here. Like multiple impressions in advertising, I wonder how many times it takes for an individual to hear the word wrong before that person takes it to heart that there is something "wrong" with them. Admittedly, sometimes the public is just struggling with how to interact. I experience their struggle often when I use a wheelchair to save energy and increase my mobility. In a memorable occasion one summer a young teenager, obviously brand new at her first summer job in a ticket booth at Great America asked me innocently: "Are you permanently affixed to that chair?" This incredible (and in retrospect humorous) question took place when my pusher and I were standing/sitting in a long line to purchase our admission ticket. A kindly security guard approached and pointed out that another ticket window which gave a discount to people with disabilities. Forget the discount we agreed - a booth that had no line at it looked just fine to us. That is until I spotted the look of distress and panic on the face of the young girl in the ticket window. The visual she was seeing as we approached was someone in a wheelchair with no visible Quiggles except a strange sandal on one foot which could have easily been healing a broken toe or some other "minor" misfortune. I just bet she was thinking, oh dear, she doesn't qualify for reduced cost admission to the Park, or then again, maybe she does...the dilemma was etched on her face as "Are you permanently affixed to that chair?" came out of her mouth. I'm sure she thought the answer to this astute question would tell her what admission price to charge. Fortunately my witch-switch was stuck in the off position that day. I explained that I probably did qualify to be at her window (divulging to her all of those "none of your business" medical facts strangers don't usually hear from me) and then suggesting much more appropriate verbage for future inquiries when she needed to ask an individual if they qualified under the park's discounted admission policy.
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Living with Quiggles: Some People Still Don't Get It
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Living with Quiggles: Some People Still Don't Get It
