[statecom-discuss] Ashley's Medical Treatment

[jturner at alum.rpi.edu]

>There are of course other factors not covered in this piece. How do we
know 
>that experiencing the full cycle of physical life, while not fun in
many 
>ways, can be in others, how do we know so we can decide for Ashley
whether it 
>might not be interesting?

Might a three-month-old find it "interesting" to grow breasts? I dunno,
I'm a bit
out of touch with my inner three-month-old. But I'm more willing to
believe that
the difficulties associated with her growth and development will more
likely
reduce her opportunities for enjoyable experiences with her family.

>the whole point is that we cannot get inside her experience. Perhaps
the 
>most everely diabled amongst us can to some extent - her parents could
not be 
>expected to... We can understand that the parents want her to be on
balance 
>more of a joy than a pain.

Having lived with my father through the late stages of his brain cancer,
I can
state that dealing with someone who was probably somewhat more advanced
than three months of mental age would doubtless have been easier and
more
"fun" all around if he'd not been so big.

>The point of the statecom meeting was that the society as whole needs
to take 
>responsibility - to provide all parents with supports - ones that make
Ashley 
>being less of a pain to care for more of a moot point.

Ah, well, yes. But should we hold Ashley and her parents hostage to
that?

>and the use of psychotopic drugs to deal with ADD/ADHD is actually the 
>perfect analogy - not something more heinous but something of the same
clothe, the 
>same continuum - about making children more manageable for adults no
matter how 
>invasive the effect.

It's another issue entirely. ADD/ADHD people grow to independence.

>Not sure Jeff why you sent this? was there something for the statement
you 
>wanted us to take from this? Love, grace

I was late and wasn't clear on the whole letter being issued, but I'm
biased
against interfering in the private decisions of others without a very
good
overriding interest.

--Jeff