Gordon, you AIN'T stupid!

Moebius syndrome is a congenital (meaning, it started very early in fetal
development) oculofacial (eyes and face) paralysis.  In other words, I can't
really close my eyes, raise my eye brows, smile or frown or show any facial
expression.  Do you remember hearing about the little girl (Chelsey) who had
"smile surgery" five years ago, in California?  THAT is "Moebius syndrome".
There are a whole lot of "other" things .... from respiratory (kids with
trachs, ventilators), eating problems (kids w/ g-tubes), "Poland anomaly"
(chest and should abnormalities, club feet, missing feet or hands,
syndactyly (webbed or small hands), autism, retardation, depression, etc.

I knew nothing - NOTHING - when I was a kid.  I just thought I was weird,
different, etc.  And I kept it all inside and pretended to be "normal"
because that is what I thought everybody expected.  I didn't even know if I
"qualified" to be "disabled" (I just thought I "qualified" for 'weird or
different')

It's only after getting the diagnosis (when I was 22) and looking up
information (ALL of it strictly medical in nature, not a pinch of social
stuff) that I later found stuff written about the social-emotional aspects
of a facial disfigurement.  Frankly, I wish there had been some way this all
could have been introduced to me when I was a kid, in some "developmentally
appropriate" manner.  But no one ever seems to ask the adults with it how
they think the kids could benefit by knowing things about their
disabilities.

You, me, everybody else has a RIGHT to know about our bodies!  Like how they
got the disability they got, and how others have fared in the past with the
same things.  Our disability history is no less valid than our family
history!  We look at albums showing grandma and grandpa so we have a sense
of their history, but what about OUR history ... how have others fared with
the same thing we have, before us?