Denise,

How could you have denied a physical disability ?  Kathy








----- Original Message -----
From: Denise D. Goodman <[log in to unmask]>
To: <[log in to unmask]>
Sent: Monday, November 01, 1999 10:10 AM
Subject: Validation/CP Kids & Adults


> My elementary exaltations of the support this group brings me personally
(as
> usual :D) were elegantly expounded upon by Steve.  The "support" I find
here
> is also what aides me in trying to " ... find myself in daily acceptance
and
> celebration of the primary disability that has and does cause me the
greatest
> pain and difficulty of my life."
>
> Unlike Steve, I haven't quite reached the "celebration" stage.  I still
> struggle with maintaining acceptance.  This is difficult for me because
for
> years and years I lived in denial of my disability.  I was (or thought I
was
> :D) a "passer."  I now find myself struggling emotionally with the
secondary
> debilitating conditions which interfere with my own set ideal of who I am,
or
> perhaps, who I was.
>
> PEDIATRIC VS ADULT:   I've been trying to keep up with the various current
> threads.  Forgive me in advance if I restate ideas, make points already
> covered, or miss the gist of what's been said.
>
> I know of late there has been some discussion on pediatric verses adult cp
> issues (research/funding/difficulties, etc)  In my own experience as a
child
> the taunting, cruelty, and difficulties faced (including
surgery/braces/PT)
> were not nearly as frigtening as what I now face.
>
> The parents who participate here act as proxy for their children.  You are
> the ones who project into your children's future.  You try to utilize
every
> available resource to ensure your children reach their full potential
(which
> is natural and the right thing thing to do).  As a child, my parents also
did
> this worrying for me.  I only had to deal with the day to day
difficulties.
> The name calling.  Feeling left out, unworthy, defective.  I was also
> motivated by promises of someday being "normal."  A good girl who does her
> exercises, wears her braces might someday walk straight.  This of course
> wasn't true.  All that was done was merely to maintain or slightly improve
my
> existing abilities.
>
> Once I was older (early teens) and understood what I had was all I was
going
> to get (mobility wise), I did have anger and restment.  Once I finally
> accepted this I was fine, UNTIL I hit about age 24 when I started to
> experience all of these "secondary" conditions and I began to loose the
> precious abilities I had worked so hard to maintain.
>
> Now, as an adult, I am repsonsible for my own projections into an unknown
> future.  The same fears and doubts my parents must have faced two decades
> before now became mine to bear.  The only problem with this was once I
began
> to search for help, information, some hope or explanation - none were to
be
> found.
>
> As parents you may not feel there is enough information or resources
> available for your children.  Compared to that which is available to the
> adult cp patient, you have ten-fold the options which are open to adults.
>
> Just think how terrifed you would be if the medical community told you
there
> was nothing wrong with your child, when you KNEW they were having problems
> and getting worse each day.  This is how I feel facing the future as an
adult
> with cp.
>
> I would never try to take anything away from the children.  Hey, most of
us
> (with maybe the exception of Steve :D HA!) was once a child.  Many of us
here
> have children of our own and know the paternal drive where you would
gladly
> lay down your own life to spare your child.    I think the important issue
we
> need to keep in mind is (and I believe someone else had made this point,
but
> it is so important it is worth restating) = All of the "adults" here are
the
> pioneers who are helping to pave the way for the children.  If we make a
> collective shout loud enough that the medical community can't ignore,
perhaps
> they will do the necessary research which will help prevent the cp kids of
> today from facing what the adults now face.
>
> Many of the programs the children have open to them did not exist when I
was
> a kid.  In fact (which I've mentioned before) I was in the first pilot
> program (Title 6) which ALLOWED disabled children to attend public school.
> If I'd been born a few years earlier, my parents would have had to home
> school me, or drive nearly 40 miles to a childrens hospital, [or hide me
in
> the attic :D {kidding}.]  Mainstreaming and inclusion would not be in
place
> if the CP adults here didn't "storm the beaches."  The attitudes toward
the
> disabled have also come a long way and many of the adults here were the
ones
> who had to suffer through the indignities and ignorance before this change
> could ever take place.
>
> Steve said, "Every day I feel less shame about how I appear, though  old,
> frail ..."
>
> Personally, I had lived my life in denial of my disability.  My shame was
> never felt because I refused to believe/accept I was disabled, despite the
> daily name calling and cruelty of other children.  As an adult, no one
calls
> me names (at least not to my face :D)  YET,  it is now impossible to deny
my
> disability.  In addition to dealing with the physical problems, I find
myself
> more "handicapped" by my inability to accept my "new" limitations.   Each
day
> I struggle to hold on to acceptance.  The support of those here help me
> because like Steve, I find " ...validation and joy in my CP "tribal
> identity." "  Actually, I'm still working on the joy :D
>
> Anyway, that's all I wanted to share.  Take Care, Be Well:  Denise.  PS:
HI
> Mag, good to "see" you again too!
>