Last summer , I gave a speech on inclusion to a
college class.





--- "Cleveland, Kyle E."
<[log in to unmask]> wrote:
>  Okay, here's where I want to head with this
> thing:
>
> First off, I don't want to get hung up on
> "exclusion" or "inclusion",
> wheelies, walkies or whatever.
>
> The issue I want to address is simply this--
>
> We (and our parents, in most cases) were told
> out of the gate that CP is
> static.  Sure, the lesions don't change (even
> this statement may be
> suspect), but as Bobby alluded to in an earlier
> post, secondary symptoms
> present later on as we age.  While being an
> information clearinghouse for
> all who are having aging issues, yes, I do want
> to place emphasis on a
> certain segment: individuals who were dx'd with
> "mild" cp and are now
> dealing with issues far greater than what they
> faced early on.  Mags, Deri,
> Bobby, Kat, Ken, Carla and myself, to name a
> few, are individuals who are
> facing, or will face, the kinds of issues I
> would like to address.
>
> Specifically, issues like employer
> expectations.  For example, when I
> started my job several years ago, I had no
> problems with fulfilling my job
> duties.  Now, this is not the case at all.
>
> Family issues:  Ken and I have discussed what
> it's like to be a dad of young
> kids and adolescents.  There's a lot of guilt
> associated with not being able
> to do a lot of the normal "parent" stuff.
> Platitudes like, "Your kids will
> love you no matter what" sound nice and give
> warm fuzzies, but when you
> can't drive to soccer practice because of
> fatigue or spasms, these can be
> demasculating for CP dads and just as
> demoralizing for moms.
>
> Relations with spouses:  Sexual relationships
> in marriage obviously change
> with age, but "performance" issues have a
> different dynamic when athetoid or
> spastic problems are thrown in the mix.
>
> These are issues only a special subset of our
> CP population face.  I don't
> want to sound exclusionary, but not every CP
> problem would be best served by
> this site.  The more general in scope, the less
> impact for specific issues.
>
> Bottom line:  Walkie, wheelie, married, single,
> parent, parent-to-be,
> parrent-wannabee--if you are facing real-world
> problems because secondary
> symptoms (or exacerbation of primary symptoms
> due to age) are affecting your
> quality of life, then this would be your
> "go-to" webpage.
>
> What I would really like to stay away from are
> things like insipid
> "inspirational stories", poetry, "voodoo"
> health care (doesn't necessarily
> exclude all forms of alternative medicine
> (chiropractic, acupuncture, etc.),
> but therapies will need to be supported by more
> than just anecdotal
> evidence).
>
> It WOULD include information on ADA (go, Kat,
> go!), tips on application for
> employment disability, jobs information outside
> of what's provided by voc.
> rehab., info on "parenting with a disability",
> and most importantly:  a
> venue for educating the medical community that
> "Post-CP Syndrome" is real
> and must be addressed.
>
> -Kyle
> -----Original Message-----
> From: BG Greer, PhD
> To: [log in to unmask]
> Sent: 6/29/02 11:19 PM
> Subject: Re: New web site idea
>
> Let's don't get into a "walkies" vs. "wheelies"
> thing here. Just as many
> AB's
> will becomes disabled, many walkies are headed
> to being wheelies.
> Whether you
> have arhtritic knees from walking or athritic
> shoulders from wheeling,
> we all
> have stiff joints, pain, spasms, etc
>
> Bobby


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