Well, yes, I see all that, but we must remember that CP is a diagnosis, just
as polio is a diagnosis, and so are muscular dystrophy, multiple sclerosis,
menningitis and cerebral infarction, all of which can result in injury to the
brain and spastic muscles.  That's what I'm objecting to.  Yes, CP is a
disability and so is polio and other conditions and side-effects of illnesses
or conditions.  But I don't think I have the knowledge or training to
distinguish CP from a stroke victim, or MS or MD.

I have a great deal of respect for what others want to call themselves.  If
they prefer not to see themselves as disabled, that's their call, not mine.
I'm not going to impose my thinking on them. If they wish to be in denial
that's their thing.  Names have power, and I'm not going to unsurp anyone of
their own power by labelling them something they don't wish to be labelled.

Kat


On Tue, 16 Jul 2002 17:12:17 -0400 Trisha Cummings <[log in to unmask]> wrote:

Hi Kat,

           It was the brain damage at birth part - that was the tip off.  I
did talk to the man for sometime and his girlfriend at length. Amber and the
therapist think Jonathan is a Hemi - we could be wrong - but he looks carbon
copy of Amber and as Amber says - no one holds their arm like that for
balance. Personally I don't care what you call it - its going to have aging
similarities to CP.
        Lots of people - especially older ones aren't comfortable with
disabilities and in the old days - the kids where hidden away - I remember
the little girl who sat behind me at the beginning of 1st grade - had some
problem - and they just took her away one day - and I would see her at her
house playing - I have no idea what was wrong with her - But I remember her
to this day - and I wonder how has she fared with no education? Of course
that was the 50's - thankfully the majority of us have moved into the 00's
with some better ideas - but what about 30 years ago - 20 years ago? Leaves
some room for some possible doubt - especially if like Jionathan's parents
you are macho male - who can't handle a disabled son. Who knows - he may
well only have a deformed knee and need to hold his arm under his chin for
balance( just like Amber) ( and therefore it has atrophied - just like
Amber's) - and therefore no be able to use his hand - he was born early and
ill becasue his mother is diabetic - But I tend to think - his parents are
ashamed of the CP - they refused any help for him in school - so he has no
IEP - his parents frustrate the teachers who want to help him.

                                      Trisha


> Excuse me, but just how do you know someone has CP?  I realise you see
> something like awkwardness in gait and spasticity and see CP, but there
> are
> other things going on you may not be aware of.  I have CP but I don't
> assume
> someone else has just because he or she looks like they do.  It could have
> been a stroke or menningitis, or an isolated case of polio; you don't
> know.
>
> Kat
>
>
> On Tue, 16 Jul 2002 16:31:50 -0400 Trisha Cummings <[log in to unmask]>
> wrote:
>
> Kyle,
>
>    I think your website is a great idea.
>
>    Don't let the "little" folks get you down.
>
>    One thing to think about is not everyone with CP knows they have CP - I
> ran into a man in the McDonalds by my house - he was standing just like
> Amber and stubled and I grabbed him before he hit the floor - and he said
> I
> am disabled - and I said yes I know - you have CP - he said no I have
> brain
> damage since I was a baby. and so on ( he is Hemi- like Amber). And
> Jonathan
> who goes to school with Amber (also a Hemi like Amber)  - and he has a bad
> knee - But Amber, and I and her special ed teacher know its CP. It think
> denial and perhaps like with Amber - rthey never said the word - I read it
> in a book - leads people to not know they have CP - just that they are
> disabled. I was a premie, had braces and special shoes when I was little -
> and to date still have this walk funny - right foot points out to the
> right
> at 45 degree angle, the attached knee angles off to the left, and the hip
> joint pops so bad sometimes - it hurts and feels like its coming apart.
> Who
> knows what you call that - I call it darned awkward.
>
>    Go for your website - when you change your name from Kyle Cleveland to
> Cerebral Palsy Man - then maybe your are taking things to seriously - in
> the
> mean time you are doing a great thing to help others.
>
>                               Brightest Blessings - Trisha
>
>
>
>
> >  Sign me up for the survey, Bobby.
> >
> > I met with an old friend for breakfast yesterday (old in the sense that
> > we've known each other for a long time, but we still talk at least a
> > couple
> > times a week).  I was telling him about the web page idea.  Could not
> > believe his response.  Something along the lines of, "Well, you know,
> you
> > have to be careful not to invest too much time into something like this.
> > It
> > could take away from your family time.  Also, I would hate to see you
> > start
> > taking your 'identity' from your disability."
> >
> > It's amazing how people are so quick to pour cold water on other's
> > excitement and so slow to encourage.
> >
> > -Kyle
> >
> > -----Original Message-----
> > From: BG Greer, PhD
> > To: [log in to unmask]
> > Sent: 7/5/02 12:20 AM
> > Subject: Re: A new aging survey for the list
> >
> > In a message dated 7/4/02 7:20:44 PM, [log in to unmask] writes:
> >
> > >I would, of course.  And you might add "paraplegia" to the location
> > list.
> > >
> > >Kat
> >
> > I will be cantankerous and stick with diplegia. LOL Actually, I plan to
> > reformat Carla's original 10 questions. I hope we get a better response.
> > How
> > far along are you on the new web page?
> >
> > Bobby