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Subject:
From:
"Denise D. Goodman" <[log in to unmask]>
Reply To:
St. John's University Cerebral Palsy List
Date:
Wed, 8 Dec 1999 12:15:44 EST
Content-Type:
text/plain
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I'm so glad to see this topic hasn't lost any steam, because as previously
stated, I can't think of a more important issue.  I'm also starting to get a
better understanding of both sides.  What I mean is, now I have a glimpse of
how parents of kids with disabilites see this issue.

I hear and feel the Lioness in both Cindy and Elaine.  A natural maternal
instinct.  Cindy said, regarding Lizzy Jo, "But I can not protect her, her
whole life, so I just enjoy her for who she is now."  Elaine said, "I will
not have people staring at my kids like their freaks!"

My mother tried to make me hard because she too said, "Denise, I can't always
be there."  Now I obviously don't have the monopoly on what it is to be
disabled, but I just wanted to make one point Elaine or Cindy might not have
considered.  This obviously might not apply to your collective kids because
they are still rather young, and of course, we are all individuals so they
may never have the same feelings as mine.  However, I feel this point has
merit so here goes:

I can only imagine the pain a parent feels when they desperately want to
protect their children, and yes, without a doubt when you are CONSTANTLY
stared at, it can start to wear you down, but most of the time I hardly even
notice.  Like any thing else, you simply become accustomed to what is part of
your everyday life.   You even forget.

In fact I remember when it took somebody else to point out I was still being
stared at.  When I was 18, my boyfriend at the time was waiting for me in his
truck.  I was coming out of a convience store.  As I got into the truck, he
started to rant and get out of the truck.  Apparantly there were three men by
the pay phone who were staring at me.  My boyfriend was fuming, "I'm going to
poke their @#?!!! eyes out!"  I grabbed his arm and told him to just ignore
it, this was no big deal and it was something he was going to have to get
used to.  His protective instincts were in over- drive and I still love him
for caring enough to risk a three on one fight, but I explained to him that
staring was preferable.

STARING is preferable?  Yes.  In my opinion I would much rather be stared or
gawked at then what I like to refer to as the "Invisible Man treatment."
This is what I wanted the parents here to know about.  I am ALWAYS much more
concious when some one sees me, then jerks their head in the opposite
direction and so obviously goes out of their way NOT to look at me.  Looking
at something out of the ordinary is perfectly natural.  Think about it.  When
I'm out at a store or restaurant and I see, let's say a woman with really
long hair, past the waiste, I stop and look.  Not because it is freakish,
it's just something you don't see too often.

When your kids get older they will understand that it is human nature to be
curious and that eyes linger longer when they see something or someone who is
a bit different.  This staring (as long as it isn't extremely hate/pity
filled) doesn't hurt me, but given the "invisible man treatment" does affect
me.  Even as a child when people suddenly looked away, intellectually I said,
"well, they are just ill-equipped and don't know what to do.  They are trying
to be polite and not stare."  However, my head and heart are often at odds.
Emotionally I felt, "I'm just so hideous eyes must be averted from my
grotesque form.  I'm a sub-human that others would rather remove from their
sight than see."  YES, overly dramtic and not at all true, but deep down
inside in the tiny place which no amount of emotional armor can protect, that
is how it felt.

I don't know if this helps the parents.  I just know that if you have a
strong inner sense of self, no amount of staring is going to destroy you.
Yes, it gets annoying and bothersome, but it's just another part of having a
disability.  My personal way of dealing when I became a teenager (which
carried over into my adult years) was  always to give em something to look
at.  I figured if people were going to stare anyway, I'd dress more
flamoyantly, bear a little cleavage, etc :D

And always remember, your kids are strong.  They do say, that which doesn't
kill us, makes us stronger and I believe this to be true.  We survive,
perhaps not unscathed, but in the end, we are stronger and more equipped to
deal with life.  Take Care, Be Well:  Denise.

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