Laurence wrote, about Phil's response to my story:
>I believe we can find ways to accommodate most differences given
appropriate
>resources. I also concede that it is possible that the Earth is
actually
>flat. What I cannot see is that self -determination in this case,
was
>comprimised.
>
>If there was any indication, in any way that could be given
interpretation -
>even considering the strong motivation to participate in this singing
>workshop - that singing in the performance while having seizures was
her
>preferred option and if such indication was given - and she was taken
to
>hospital against her wishes - articulated or otherwise - then she was
not
>'self-determining'.
>
>If however, the decision to go to hospital and miss the performance
was
>either initiated or agreed to without coersion then the action was
>self-determining. No amount of accommodation could have recreated
what was
>supposed to be and sometimes second best just won't do.
>
>The seizures were what interfered with self-determination in this
case it
>seems. Barriers to self-determination are not always exterior to the
person
>and not always able to be negotiated - specially when they are not
>anticipated. The important thing is that decisions and choices are
always
>effected within the realm of possibilities - and perhaps a bit beyond
to
>stay positive.
Yes, the seizures were what interfered with self-determination.
The people at the workshop probably *did* call the ambulance faster
than I would have liked-- after seizure 2, rather than seizure 3 or 4
(my choice, if I could have articulated it). That said, my seizures
(and post-seizure exhaustion and confusion) would have made singing
impossible-- even if I'd stayed in the concert hall.
I like singing. I like listening to music. And I usually hate
hospitals. In the end, tho, I was extremely glad to be in hospital
this time (I don't believe I just wrote that!)-- it meant I could be
given meds to stop me fitting.
In an ideal world, I might have been medicated on the spot, and left
to sleep where I could at least hear the performance. For that to have
happened, tho, I would have needed my own private carer or nurse to be
with me at the workshop. And, my seizures being unpredictable, I also
need to take them with me everywhere else.
Not realistic. And probably even more limiting than an occasional trip
to hospital-- genuinely needed or otherwise.
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Ria Strong
Melbourne, Australia
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