June 12, 2016

Almost embarrassed to mention my near miss with “disfigurement”

It’s almost embarrassing to mention my own personal experience with my birthmark, because it is so trivial.  But when I think about why my birthmark has NOT had much impact on my life, I see clearly the impact of the messages that kids get from their parents and the world around them.  I feel lucky and grateful — and more aware of the ways that the lives of others with the same or more substantial “imperfections” and “impairments” may have been changed by the reactions of their parents and the world around them.

There was a defining moment in my life when I had a near miss with defining myself as “disfigured”  Had that moment gone another way, I might have carried myself  differently, dealt with other people differently, and adjusted my view of the future that was possible, given my situation.

I do have a red birthmark on my cheek — roughly 2″ in diameter.  It has grown darker with the passage of time.  It was pale red in my youth.  In my mind, it has never been a big thing — but over the years I have come to realize that everyone doesn’t agree with that assessment.

My life would have been very different if my parents had taught me to see myself as disfigured. Daddy was a pediatrician, and approached every parenting issue from this point of view:  “What will create the best adult out of this kid?”

While I was in elementary school there must have been a specific day when I asked a question about my birthmark — because I remember what happened next.   They pointed out that everyone has “imperfections”.  In fact,  we (the four kids) then took turns combing over each other’s bodies until we did find some kind of mark on all of us.  Theirs were QUITE subtle: a pale brown “café au lait” spot on an arm, a patch of unusually thick and hairy skin.  Nothing on the face.   But as far as I was concerned, that proved the truth of my parents’ statement.

They also claimed that during Colonial times, people thought the best way to tell who was a witch was to look for an imperfection — because witches look perfect and real human beings don’t.  Later, with no apparent awareness of any philosophical contradiction, my parents also pointed out that only God is perfect. Overall, their explanations answered my questions, met my needs, reassured me, and settled the issue. I didn’t sense that anything was “wrong” with my birthmark, my face, or my appearance. I decided I was fine in that department.  And in fact, my parents indirectly told me I was pretty by constantly reminding me that  “beauty is only skin deep” and focusing their energy on molding and developing my “insides”.

So I grew up feeling pretty “normal” and reasonably confident — without any belief that I had any appearance problems beyond the ones that most kids have (pimples, hair, etc.).  No thoughts about my birthmark at all, really.  I wasn’t afraid of other people’s reactions to it.   In fact, I was only rarely asked about it, and then I would simply answer “it’s a birthmark.”   I was never ever teased about it or bullied — nor even called names.  A few years ago I realized that my maiden name (Harting) would have made a great rhyme with farting!  As things turned out, I was quite a popular kid, elected Homecoming and Junior-Senior Prom Princess two years in a row, etc — all the while feeling the usual terrible insecurities and desires of adolescence. Using my mother as my role model, I never wore any make up at all unless it was a dress-up occasion.  That’s still true now, except I wear cover-up for presentations as well as fancy parties.

It wasn’t until I was in my mid-30’s and went to a cosmetics counter to ask for cover-up makeup that the salesperson’s reaction taught me my attitude was unusual.  She said most women in my situation WHISPER when they approach to ask her for cover-up.  A few months later, a woman my mother’s age (with whom I had gotten quite close) asked why I didn’t cover my birthmark.   I acted surprised and said it just didn’t seem necessary.  She then shared her theory: she had decided my coping strategy was to be defiant and “flaunt it.”  I was stunned. I had had no inkling she thought my birthmark WAS a big deal.

She did get me to thinking though.  I realized that if other people notice the birthmark, I can use it.  So now when I arrange to meet people I’ve never seen before, I sometimes remember to say I have a birthmark on my right cheek.  It’s useful as an “identifying mark” as the cops would say!

What a gift my parents gave me!   Imagine how different my perception of myself and the way the world was looking at me — and thus my interactions with the world — could have been. All because of a little 2″ square red mark on the skin, that affects no function at all.  I suspect that my outgoing and dominant temperament / personality and social skills have also been a help.  The fact I never experienced bullying of any kind (until I was in medical school) indicates to me that I am by nature near the top of the human version of the hen house pecking order.

I sat next to a guy on a plane recently with a facial birthmark like mine–a hemangioma.  His was BIG.  It covered half his face and neck.  In some places, dark blue-red skin hung in folds, almost like a turkey.  It really was disfiguring — from my vantage point, one side of his face didn’t look like a “regular” face at all.  The guy was SUPER chatty, outgoing, and engaging.  He was almost so “in your face” as to be socially odd.  But after a minute or two, the net result was that he put everyone at ease because our focus shifted to the topic of conversation instead of his appearance.  Turns out he is a specialist in some sort of technological field (forget exactly what) and is on the road constantly.  That means being out in public and meeting new people in new situations is his everyday reality.  I decided that his extreme extroversion is the way he has responded to his predicament — the way he copes with the outside world’s reaction to his appearance.  Rather than shrink away, ashamed, in an attempt to be invisible and thus sidelining himself, he has INSISTED on his right to participate fully in life by INSERTING himself in the middle of it.  I wonder what HIS parents told him as a child…….

I guess you could say that guy on the plane and I have ended up in similar places — with an approach sort of like the puppy in The Present video.  If you don’t SEE yourself as disfigured / disabled, and/or if you don’t even CARE that you are, life is a lot bigger and more fun.

Which makes me wonder:  why do we insist that people define themselves as “disabled” in order to be eligible for “reasonable accommodations” that would let them get or keep a job?  Why can’t we just ask them to explain what they cannot do without the accommodation — instead of insisting that they label themselves?

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