As a parent of a CP kid, you certainly are entitled to your opinion, but as
an CP adult who is entitled to make up her own mind, I can say I welcome
such studies if they will help us in any way.   We have had studies
presented to us and many of us have willingly particpated in them.

We list admins welcome the studies if they are legitimate and add to the
knowledge of those with CP and how they live and function in our society.
Bobby emailed us with this request and we agreed it was a valid one and so
it was posted.

Kat
CP Adult - Living and working fulltime in N.C.
C-PALSY List Admin

On Sun, 30 Jan 2005 16:05:25 -0500, Cynthia Crosby <[log in to unmask]>
wrote:

>Regarding research.
>
>As the parent of a child with cerebral palsy, it is
>significant to emphasize that I participate in  list serves
>solely for the sharing of experience with other parents.
>Parents sharing with parents is a vital resource that should
>not be corrupted from well-meaning clinicians. It is critical
>that these list serves be available and comfortable sites for
>parents to openly discuss all topics related to a cerebral
>palsy without fear of further diagnosis, labelling, judgment,
>recrimination, or more unsolicited expertise from clinicians.
>For those of us families involved in the service system, we
>need a place of safety  from further questioning, more
>labels, predictions, prognosis, etc. I do not feel it is
>appropriate for a clinician to solicit research subjects from
>the list serve.  There are many places to do this
>solicitation.  It is important to  respect the integrity of
>the list serve.
>Cynthia Crosby