I love the list, though sadly ( to me) these all seemed more
endurable than what bugs me the most:
1. What do you usually do?
Especially as this has only and ever been asked by health care and
social care folks, it is infuriating.
I know nothing about how to do most things as a paralyzed person and
30 seconds of reading would tell them that i spent over 50 years as
an able bodied person. This has been asked in the context of
complaining that the clinic was inaccessible; that i couldn't get in
the front door of the physical therapy
place ( and was told to write the building manager); and when I
complained about the lack of paratransit in my area.
2. You need to advocate for yourself.
Again the group above ( those supposed to help) are the first with
these words out of their mouths and again without bothering to assess
what I have done, tried to do, or my own obvious limitations. One man
who said this has now left the organization that was supposed to help
and over time confessed to me that my unheeded letters and certain
aspects of my situation were travesties.
3.It's only one step.
Down or over which my wheelchair would fall or spill me out.
4. Maybe someone could carry you.
Nice idea. Who, exactly
When I had transportation ( in another city) to grocery shop, I did
and it was damn hard.
I would have appreciated praise for doing it. I miss terribly the
access to shop for myself,
work, perform, go to the movies or a play , that I had at the painful
and terrible beginning
of my paralysis. I was constantly in fear and afraid, but closer to
my previous life
than I am now, where i can nowhere and do nothing outside my home.
Perhaps I should send these observations to the Reed Foundation, too.
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