Laurence writes:
> .
> It may seem trite but even just the opportunity to speak in an interview
>. . . was in some ways enlightening (so a few said).
> They had never even thought about some of the insidious ways they had been
> individuated into these roles.
Laurence, having read over your study, I was struck by the same
eagerness to talk that the parents evidenced. I was going to ask you
how you were able to negotiate such candid responses, being male
(and other variations of the outsider, as far as mothers are
concerned). <joke>
But then I remembered the first time anyone ever asked me what *I*
needed, and how I immediately burst into tears--for every
doctor/therapist/neurologist/optometrist/orthopedist/socialworker/etc.
I had come into contact with up until then, had always TOLD me what
I needed: I needed to spend my highly rationed free time doing
therapy with my son. I needed to buy him a wheelchair. I needed
to... well, you get the idea. For someone to take a moment to ask,
"What can we do for *you*?" was to open the floodgates.
ME? I'm not the 'case,' here. I'm not the one to be concerned
about.--But since you ask...
I could not stop talking. Telling my most repressed, private,
painful worries and fears to a stranger, until she was, I'm sure,
sorry she asked. But what a relief I felt, for an hour or two
afterwards.
The point is, all of us in the disability experience need a forum to
express ourselves, our needs. More importantly, we all need to be
heard. Out there in the 'real' world are mostly satisfied members of
the status-quo-Cult--and they are NOT listening.
At the very least, we might offer each other here, online, a bit of
'respite,' by listening and sharing, and realizing the things we have
in common. (Thanks to J and M for adding this new metaphor to my
repertoire!)
Cheers, mates.
Dona M. Avery
Arizona State University
Tempe, AZ 85287-0302
www.public.asu.edu/~donam
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