Learning to Dance in the Rain

Man woman dancingAdjusting to a stigmatizing health 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.

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Turning Cartwheels


Doing cartwheels!

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.Continue reading

When Stigma Kills

bloody handYou wake up one morning and suddenly you find yourself questioning why you have been working so hard fighting for a cause, when maybe you’ve just really been tilting at windmills.  You’re tired, burnt out, feeling you haven’t even begun to make a difference, and you can’t help but think of the lost income if you’d followed another career path; the time not spent with family or vacations foregone  – you also see the sands of time slipping away – and suddenly you go nuts. Some might call it just the usual midlife crisis – but for those who have passionately fought for a cause I think it’s different – something a small red sports car just won’t fix.Continue reading

Harriet McBryde Johnson

Harriet McBryde Johnson

Harriet McBryde Johnson

Recently America’s largest minority (people with disabilities) lost one of its most committed advocates, Harriet McBryde Johnson. I got to know Harriet both from reading her articles and book (Too Late to Die Young), and from a series of telephone conversations I had with her when she helped the Foundation I run with suggestions for a conference on Defeating Stigma in Healthcare. She was right in the middle of a media deluge resulting from an article she wrote for Parade Magazine when I called her, and yet she found time to promptly return a stranger’s message and immediately offer help.

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Let’s Go Kiss a Cow!

brown cowThe cost stigma extracts from those who are disqualified from full social acceptance never ceases to amaze me.  A huge part of the costs that  surround stigma management is the effort put into passing, the term used by Dr. Goffman to describe the behavior of individuals who have a stigmatized health condition or disability which they can (although only with substantial effort) keep hidden.  Goffman states that: “Because of the great rewards in being considered normal, almost all persons who are in a position to pass will do so on some occasion by intent.”    There seem to be many creative ways that people discover to pass, probably many more then there are health conditions people are trying to cover up.  Following are examples of these efforts to pass from the book Stigma: Notes On The Management of Spoiled Identity.

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The Guinea Pig Club

spitfires flown by the Guinea Pig Club“The normal and the stigmatized are not persons, but rather perspectives.” – Erving Goffman, 1963

One of the things I was most looking forward to upon my first landing at Heathrow Airport was the long ride into London in one of England’s famous black taxis.  It all started innocently enough when once I was settled in the incredibly spacious vehicle I  asked the driver a simple question, and to my amazement didn’t understand one word of his reply – experiencing first-hand the old saying “divided by a common language”.  The situation became even more embarrassing and went downhill quickly when he realized from my lame replies what was happening – after all, these guys are smart, they have “the knowledge” (a term applied to the in depth knowledge of 320 main routes through central London that taxi drivers must know without the help of consulting a map in order to obtain a license). Then the true awkwardness set in as he tried to apologize for his poor Cockney English – speaking very slowly I might add.  When I remarked that however difficult their accents are it was the Brits who took to the air and sea in anything that would fly or float, thus saving us both from truly being able to communicate in a common language – German!

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Who Is Going to Do It?

lit candlesOver a lifetime we all construct a belief system, a compilation of our life’s past experiences, education (or lack thereof), parental attitudes, religious upbringing, who we choose for a life partner, and the quality of our friendships, to name just a few influences.  Our individual belief systems are as unique as each of us.  Each day’s new experiences are filtered through these beliefs.  Individual belief systems lead some to accept strange objects in the night sky as an indication of visitors from across galaxies; others to attribute happenings in their lives as coincidence while many may see these “coincidences” as guidance coming from a source beyond their human ability to see or hear.  Our belief systems also influence how we deal with stigma, for instance will we stigmatize others; or how much we might internalize stigma if it is directed at us personally.

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The Foundation Recognizes SUNA with America’s First Defeating Stigma in Healthcare Award

SUNA logoChicago, Ill., (September 7, 2004) —  The Simon Foundation for Continence is pleased to announce that the Society of Urologic Nurses and Associates (SUNA) is the first recipient of the Foundation’s Defeating Stigma in Healthcare Award. SUNA is a national, non-profit membership association with over 2,800 members. The Defeating Stigma in Healthcare Award recognizes outstanding contributions to removing the stigma that surrounds a wide variety of health conditions.Continue reading

The Simon Foundation for Continence Announces First Anti-Stigma Song

Chicago, Ill. (June 2003) – The Simon Foundation for Continence recently launched “I Am More,” the first anti-stigma song. “I Am More” will be used as the theme song for the Foundation’s anti-stigma in healthcare campaign. This song was recently premiered at The Simon Foundation’s June 2003 International Conference on Stigma in Healthcare, and was also highlighted at a Town Meeting on Stigma, the Foundation’s black tie Gala held at the Chicago Historical Society, and at the Jim Mullen Foundation’s first New Freedom Awards Celebration Gala held a the Grand Ballroom on Navy Pier in Chicago on July 22, 2003.Continue reading