SEPTEMBER 2008 BLOG
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.
One of the best docs in my world, both as a friend and as a partner (we are co-founders of Label Me Not - a movement to defeat stigma in healthcare) hit a milestone birthday this summer. He was definitely not pleased about this marker and, as he explained to me, he was feeling the self-stigmatization of old age. Now mind you (as the Brits would say) this is a guy who attended prestigious medical schools; is internationally known for his work as a medical futurist who is helping to chart the future healthcare needs of individuals with developmental disabilities; and an unlikely candidate to be feeling the stigma of aging. He is someone you’d think was just too busy to allow a birthday to throw him off track.
Here is the fun part – and hopefully not a very common outcome of stigma. Rick decided (after threatening anyone who dared to even offer a birthday celebration) to spend the day in one of his favorite ways (and I might add like he had often done in his youth), washing and waxing not one, but three of the cars from his antique car collection, his pride and joy. Never mind that he wasn’t twenty-one anymore; he pushed through the fatigue determined to finish the job.
The result at the end of the day was not just three shiny old cars (oops, antique cars), but also a doc on the way to the emergency room with chest pains he thought could indicate a heart attack. Fortunately soon afterward he walked out of the ER with a diagnosis of muscle inflammation, in addition of course to a much lighter wallet (after he’d paid his co-pay). Equally important, he also gained some brand new insights into what the fear of stigmatization can do, even when it is self-inflicted and possibly on the subconscious level.
In Chicago we have one of the finest rehabilitation hospitals in the world, the Rehabilitation Institute of Chicago (RIC) where they work as hard to rehab the patient’s zest for life as they do to heal their bodies. One young man, new to using a wheelchair for mobility, declined to go to a concert with the other patients because people who used wheelchairs were seated down in front. He just didn’t want to be stared at or be the center of attention. When asked if he’d been to the event the prior year (which was before his accident) he answered yes, but that there hadn’t been any wheelchairs there that year. In fact there had been almost a hundred attendees using chairs the previous year, a group which would be kind of hard to miss unless of course it really didn’t matter to the observer how others got to their concert seats.
As these two examples show, self-stigmatization can certainly be impactful in the lives of people with Quiggles; in fact I think it is right up there with how others stigmatize us. As Rick said to me about his trip to the ER – for the cost of the hospital bill he could of hired a teenager to polish the cars while he kicked back in a lawn chair and periodically pointed out: “You missed a spot right there.” And then in a more reflective mood he wondered how people ever managed to slow down and retire – and speculated it had something to do with acceptance – ie, the acceptance that there are limits with aging, just like there are limits with any Quiggle, and you can’t always continue to do the things you used to do.
Acceptance is just a ten letter word and yet it describes such a huge task. Long before talking to doc, I knew I was coming up way short in the acceptance department, especially when I recently made a list of all the things I’d like to do before I leave the planet, one of which, would you believe, was to be able to turn just one more cartwheel. I truly do miss turning cartwheels – now at middle age, exactly how crazy is that? Surely it ranks right up there with Rick’s trip to the ER, doesn’t it? And of course, it would be begging for my very own trip to the emergency room.
Acceptance – it is amazing I can even spell the word, yet it is the only antidote to self- stigmatization. Just last week I saw another example of the problem. I had just finished a speech for the Illinois Hospital Association’s program on Hospital Safety when during a break one of the nurses from the audience approached me with an interesting question. She wondered what I would suggest she do with the following problem. With tears in her eyes she said how sad it made her to see her hospitalized patients become so terribly embarrassed when they needed her help with incontinence. She wanted to know what she was doing wrong because no matter what she gave as an assurance or how many times she said it, she was so frustrated that she couldn’t seem to convince anyone in her entire career that she was happy to help them, that it was what she chose to do for a career, and that most importantly it didn’t embarrass her in the slightest.
I offered her a lot of things to say which she seemed very pleased with as she hadn’t thought of some of the approaches, but in the end somewhere deep in my heart I knew that one nurse, no matter how kind hearted, probably would not defeat self-stigmatization with words. Hopefully, the time is coming when we will all stop doing that to ourselves; it may just not be quite yet, because we all have our own brand of self-stigmatization and a ways to go with acceptance.