[stylist] Representing blindness

Tue Feb 12 17:25:58 UTC 2013

Donna,

This made me laugh, though I'm sure it was frustrating to live through,
grin.

Years ago, I was in hospital for dehydration. I had a nurse who would
not let me take a shower on my own. At first, I gave her the benefit of
the doubt and assured her I felt fine and not weak or dizzy. She
actually proceeded to explain that since I was blind, she couldn't leave
me alone to shower. I explained that it was not 1880, and that if I can
handle living on my own working and going about life, I could handle a
shower, not to mention I shower alone at home. She still wouldn't leave.
I stood facing her, and yes, I did start to lose my cool. I asked why
she felt this way, and what, if any, hospital rules stated she had to
help me. She just kept insisting I couldn't shower alone because it was
too risky. So I slammed the door on her. I assume she left, and no one
else mentioned the situation.

During my pregnancy, I had four hospitalizations, and each time I was
placed on the Labor and Delivery floor, so the nurses got to know Ross
and I. By the time I went into labor, most the nurses had met me. No one
ever had a huge problem with either of us, though a few would act
surprised when either of us did simple things like walk the eight feet
to the bathroom alone or go down to the NICU to see Declan, but
all-in-all it was a positive experience.

The six weeks Declan spent in the NICU was pretty positive too. It
helped that we were up there every day; we got to the hospital on our
own; we participated in all the same cares as any other parent like
taking temps, changing diapers and feeding.

When it was determined Declan would need a G-button feeding tube, no one
hesitated thinking we couldn't handle it. They let us always lead the
way when it came to blindness. A couple of older nurses had a few ideas
but nothing crazy. We feel so blessed to have had this experience since
not everyone does. Our pediatrician is great too. She has never acted as
though blindness is a huge obstacle rendering us incapable of being
parents.

I have some Stories from when I was training at the Iowa Department of
the Blind though, LOL! Those are stories for another time, but
boy-oh-boy, my temper was more easily sparked back then, grin.

Bridgit
Message: 23
Date: Mon, 11 Feb 2013 22:28:03 -0500
From: "Donna Hill" <penatwork at epix.net>
To: "'Writer's Division Mailing List'" <stylist at nfbnet.org>
Subject: Re: [stylist] To ponder- exercise and representing blindness
Message-ID: <B209950D620C42CE8CD1350E80EA1AC8 at OwnerHP>
Content-Type: text/plain;	charset="us-ascii"

Last summer, I had to go to the hospital for several days to receive IV
antibiotics for a skin infection. I wasn't sick, but the nurses thought
I
should call for help to get to the bathroom. I didn't. My husband showed
me
how to unplug the IV, drape the cord onto the pole, and where to hold it
to
pull it. It should be said that I had a private room, and the bathroom
was
about 8 feet from my bed, with no obstacles in the way.

Then, the nurses found out I'd actually been to the bathroom without
calling
them. They wanted me to sign a waiver of liability. I asked them why,
and
they said it was standard with patients who have conditions that effect
their balance and make them a "fall risk." I asked what kind of
conditions.
They didn't want to say blindness, so they said MS, and Parkinson's and
a
few other things. I pointed out that I didn't have any of those things
and
acted perplexed that they thought I had a condition that made me a fall
risk. Still no mention of the blindness thing. 

They insisted I sign it anyway, and I asked them if they had it in an
alternative format such as Braille. They sputtered. They said they'd
read it
to me. I explained that I didn't sign legal documents without consulting
a
lawyer. I further explained -- just as nicely and matter-of-factly as I
could -- that if they would like me to sign it, and seeing as I need a
lawyer, that they could pay for me to get one.

This caused a great kafuffle in the hospital. The nurse supervisor came
in
and said she talked to the nurse who'd been waving the form around, and
that
nurse had the impression that she had offended me somehow. As calmly as
I
could, I explained that I have had many experiences which I have found
offensive throughout my life, and that I recognized this as one of them,
but
I wasn't planning to go into a snit about it. When my husband got there,
he
pointed out to her that we are all "fall risks." They couldn't disagree
with
this, but it didn't make them very happy.

The night nurse came in and asked me to explain my idea of how I would
like
to be treated -- what I would consider to be good care from the staff. I
first explained that I wanted to be kept abreast of whatever info they
had
about my health -- if they're taking my blood pressure, I want to know
what
it is, for instance. Then, I told her that I wanted people to refrain
from
assuming that there were things I couldn't do because of my blindness. I
assured her that if I needed help, I would ask, and that if they were
uncomfortable, they could ask me if I could do something without help
and
even ask me to explain how I would do it. The important thing was to not
make assumptions based on their understanding of what blindness means. I
pointed out to them some of the things that blind people are doing,
which I
think some of them thought I was making up.

The next morning, my doctor came in, and I asked him if the nurses had
told
him what a problem I'd been giving them. He said they had. I patiently
told
him my side of the story. I was very proud of myself that I never lost
my
temper, raised my voice or used a sarcastic tone (I almost always use a
sarcastic tone, so this was a major accomplishment). Everything seemed
to
calm down after that, though I certainly felt the tension especially
with
the original nurses who had the problem. 

Meanwhile, there were people there who'd had surgery and were suffering
from
debilitating conditions. They needed someone to help them, and they were
hassling me about going the the bathroom on my own likeI was a
one-year-old.
After I got home, I considered writing a consciousness-raising letter to
the
hospital administration, but decided that this was one of those times
when
you have to pick your battles. I'd said my piece and had plenty of
things
that needed catching up on.

Oh well, I think that qualifies as a rant.
Donna