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Subject:
From:
Molly Felder <[log in to unmask]>
Reply To:
St. John's University Cerebral Palsy List
Date:
Sun, 31 Mar 2002 11:50:09 EST
Content-Type:
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<< >  I need to know how the following would impact you
>
>   1. someone who tries to do everything for you, to the point others
comment
>  Would you stand up for yourself, or let it go in the name of not looking
> "sensitive"

       This is actually a big problem for me, maybe because I'm very young
and the 'helpless child' impression is harder to shake. It's really hard for
me to balance--no pun intended--because there's SUCH resistance (at least in
my experience) to talking to/approaching people with disabilities. If I ever
do refuse help, the person gets angry, many times saying something like, "You
people want to fight everything." If I do need assistance, they're often
quite nice, but seem to feel vindicated in some way, ie, "You need one of
those motorized chairs--you'd be a lot more independent and wouldn't need so
much help." As a crutch user who sometimes uses a manual wheelchair, it's
important to me to keep as much flexibility as possible, but that can't be
explained--nor should it!--to every person on the street. I only really have
trouble if I accept the help and then hear, "You're my good deed for the
day." Very hurtful.
>
>  2. someone you met for 30 seconds tells you they need someone else to be
> around to interpret for them rather than simply asking you to be patient
or
> even finding out if they can understand your speech

      I don't have difficulty with my speech, but have noticed this bigtime
in AB's interaction with people who have CP that affects the vocal cords.

>
>   3. someone telling you they like being around you because they remind
you
> of their old friend with cp

I get this sometimes (well, that I remind them..) and find it so ridiculous
that I can only laugh. It's like buying a puppy in your favorite breed of dog
out of love for the memory of the first one.

>  4.  someone telling you how their old friend with cp used to not like to
> walk so its amazing that you do

Wow, this happens a lot to me. I'd venture to say that Kat's experiences are
fortunately uniquely positive. Not many people understand that disability has
myriad manifestations and gradations. Sometimes their encounters with us are
the virtually the only interaction they've had with disability.

>  5. someone (NOT family or friend) telling you it scares them for you to
be
> independent.
>
      Generally this is just strangers on the street, so it's easier to
dismiss. It's not ever said in these words, of course, but the intimation is
there. Several times, with nondisabled men I've dated, they've flat out told
me it was hard 'to watch me struggle.'.. etc.


>  6.  You move in a new place and someone (not family or friend) tells you
> that you are taking too long to unpack because you are disabled and by
> yourself.

I live in a dorm, so it's a non-issue for me as well. But people often push
me without asking (if I'm in the chair) because they can't wait for me to
pass them, and routinely take things I'm carrying out of my mouth, saying,
"Don't do that!" This bugs me--for me, my mouth is another arm, just a way to
transport, and it gets the job done.

> 7.  A doctor (not your own) tells you that you should be sterilized.

          It's never happened, but doesn't surprise me. So-called
professionals still don't have progressive attitudes toward disability. I
would bet mental disability gets this a lot more than physical.
>
> 8. After raising one child by yourself, someone (not family or friend)
tells
> you that you are incapable of raising a second child
>
           I'm single and don't have kids, but none of these really extreme
ones surprise me. I grew up in Alabama and the pity-condescenion ratio is
high.

> 9. Finding someone to love and want to live with and some agency tells you
> that the two of you can't live together because of your disabilities
>
         Since my dorm has told me I need a live-in attendant because I *used
to* require help with my weighted bedroom door while I learned the crutches,
it seems possible.

Molly

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