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.

Belief systems are multifaceted, and hopefully always open to change.  Over my lifetime I’ve had many an occasion when I wished I could  throw open a door, peer into a parallel universe and shout, “OK, who’s there and what is the message?”  Other times I simply looked up into the sky and mentally telegraphed “OK, I get it.”

One example which I still remember happened many years ago: I was in a stressed-out countdown mode packing in the final hours before a flight to Germany where I would deliver a keynote speech when two young men rang my doorbell wanting to share with me their religious belief system.  Normally I would have listened and learned something, but that day I politely turned them away.  Less than 24 hours later, sitting alone in a beautiful public garden in a foreign land right next to the conference center two young men stopped at my bench and in German (which I used to speak passably) asked me the same questions I’d heard an ocean away just the previous day.    My belief system does not incorporate this into my life as a coincidence, although I’m well aware some might.

Just last week, shortly after filing the column before this one with my editor, I had yet another experience which I cannot view as coincidence.  Those of you who are faithful readers of “Living with Quiggles” will hopefully recall that last month’s article spoke about the concept of covering.  Covering is when a person with an apparent stigmatized health condition attempts to minimize the condition (or cover it) in order to feel more comfortable in society.  One of the examples used in last month’s article was a person with a known vision problem who wouldn’t read when in the company of others because she needed to hold a book very close to her face to see the print.

The very next Sunday (just three days later) I, along with a congregation of approximately three hundred people, watched as a layman stood at the pulpit, held his Bible two inches in front of his face, and proceeded to read the morning’s Scripture lesson.   Watching in awe, I felt like I had been thumped on the head.  Could the timing of this visual be explained by chance or coincidence?  Of course it could, both are possible.  However I saw this man’s courage as an eye-opening message being sent from the universe which said “take a look at this example of how to defeat stigma in healthcare”.

It made me think that no matter how much I or others write on the topic of defeating stigma in healthcare, or how much traction a public awareness campaign on this theme gains, stigma will remain with us until those of us who are stigmatized find it within ourselves to display the same type of courage I had witnessed that Sunday morning.

Have you noticed recently a saying which seems to be growing in popularity – “It is what it is” – well, to paraphrase, we are what we are.  If there are steps in our way and we want to go where everyone else is going, perhaps it’s time we scooted up or down like little kids often do with gay abandon.  If we can’t hear as well as is needed to interact and sign language is not an option, then perhaps it’s time to carry and write messages on one of those old-fashioned toy slates that many of us drew upon as kids, then lifted the plastic and the “art” magically disappeared.

I’ve often asked the question: defeating stigma in healthcare, whose responsibility is it?   Now I’m beginning to think that is the wrong question.  Maybe the right question is who is going to do it.  Are you?  Am I? Now there’s the question.

Posted in Challenging Health Stigma and tagged , , .