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From: | |
Reply To: | St. John's University Cerebral Palsy List |
Date: | Sun, 13 Feb 2000 16:42:03 -0600 |
Content-Type: | text/plain |
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My disability is visible. My daughter's epilepsy developed at 18 years. She
ripped up her driver's license right in front of me. She is teaching English
in Japan and recently had a seizure at work. She has been getting night
seizures and is not aware when they happen. She is taking appropriate
medication. She dosed off and went into a seizure. How do you deal with
this? She was ambulanced to a hospital, unconscious.
She was on a trip with a friend and had a night seizure.
I gave her a little pill splitter as I didn't like her splitting pills with
a sharp knife. Practical mom. She has been using the splitter since and
never replaced it.
Joyce
----- Original Message -----
From: Betty Alfred <[log in to unmask]>
To: <[log in to unmask]>
Sent: Sunday, February 13, 2000 10:56 AM
Subject: Re: Rantings about Society
> In a message dated 02/12/2000 8:10:52 PM Eastern Standard Time,
> [log in to unmask] writes:
>
> << What about those of us that have
> multiple disabilities that are not easily seen ? >>
>
> This is something that has been on my mind ever since I first read your
post
> Deborah.
>
> I imagine it's very hard to have invisible disabilities. No one readily
> recognizes them and I wonder if the disability community acknowledges this
> the way it should? I didn't when I replied at first, I just targeted what
> hit me the hardest -- the business of being angry at society. I am and I
> explained my reasons, but chronic pain from a condition that nobody can
see
> means that you might suffer alone. If you say something about it you are
> whining, if you don't you're isolated.
>
> But your point is valid for those who do have anger at others because of
> their disabilities. I didn't mean to dismiss this. If I hate my
disability
> (which I don't) it's my problem, not the rest of the world's. If I get
mad
> at another women because she walks that "runway walk" and I can't, I've
got
> the problem not her.
>
> Sometimes I also get the impression that parents who have children with
> disabilities are invisible too. They go through changes in old
relationships
> with friends after their child is born or diagnosed, and this must be a
very
> hard thing to experience.
>
> I'm wondering if it's easy or hard to find a comfortable place in the
> disability community when you're the parent? Do you feel accepted or left
> out? I sometimes want to ask, "What do you want from the disability
> community?" Are we serving your needs as a parent, or are we doing
something
> wrong that we need to fix?
>
> I've learned a lot from Trisha, and Randy & Cindy (of Our-Kids fame),
about
> the invisible disability issue, the parent issue, and also about the
height
> issue from Trisha. People do make fun of that all the time and it's such
a
> stupid thing to do. It's just too stupid for words.
>
> Betty
>
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