20 dec 1999         

- ad voca -

Once again I feel a mild sadness accompanying the holidays like a low-grade fever.  It'll take care of itself, it always does, and life will continue normally.  And like last year, it has been triggered by some people's reactions to folks with disabilities or obvious differences.

I guess you could call me sensitive.  I don't know if, to you, that's a pejorative term.  In more cynical circles it connotes an overreaction, and to some it serves as a sort of code for diminished masculinity.  My own sensitivity is largely a result of friction, I think, a tenderness from rubbing up against bad news for a long time.  When I began this journal back in 1998 I wasn't sure how much I was going to mention my daughter or her cerebral palsy.  I haven't much stomach for the woe-is-me stuff.  Self-pity can get to be quite the hobby.  But it is impossible here to exclude what she goes through, and what I go through, and what we go through, without being dishonest.

Attention to disability is a daily ritual here in my house.  Leg braces, arm braces, hand splints, speech impairment, drooling, seizure disorder, medications, physical therapy, occupational therapy, falling and crying, trying to give voice to things she cannot express; my wife and daughter and I deal with these things every day.  After eight years, these elements have grown benign.  Simple facts and tasks routinely dispatched.  Every once in a while, however, a reminder of difference slips in.

So when I read in other journals about how retarded or otherwise non-typical people "creep out" the writer, it's as if somebody punched me.  Despite the disclaimers -- and there's always a disclaimer, a stylish mea culpa -- I take it personally.  And wrongly so.  None of it is meant for me.  In fact, it seems the only intent is to amuse or confess with a smirking humility.  I have some thoughts about that, but they are only a blend of speculation and sad wonder, a balm only to me.  As even those who write about these encounters might tell you, it's a matter of perspective.  I trust that compassion would come quickly if they were immersed in a bad situation, and I'm sure they thank their lucky lucky stars to not be in one.

What hurts most about these comments is that when I hear them or read them I slam up against the realization that I have to work very hard to dress the wounds such comments make in my daughter.  Though they are often spoken out of her presence and without intent to hurt, or posted in places she will never go, she is on the receiving end of stares and whispers and comments and giggles that are the result of attitudes born and bred by those who get "creeped out" and then trade to their own advantage on the experience.  It is impossible to disregard them.

Again, I don't think it's their intent to hurt.  All I'm saying is -- it does.  Funny is funny that way.