NFBNJ-Seniors] Advocating for Yourself in an Emergency Medical Situation: Advice for People with Visual Impairments
seabreeze.stl at gmail.com
Wed Apr 26 22:23:25 UTC 2017
Technology News for People Who Are Blind or Visually Impaired
Self-Advocacy in the Healthcare System
Advocating for Yourself in an Emergency Medical Situation: Advice for
People with Visual Impairments
One morning I was standing in my bathroom about to get into the shower
and prepare for my day when my world literally turned upside down.
One moment, I was standing, mind racing about my clothes, my work
schedule, my coffee, my dog--and the next, I had the sensation that my
thigh had been
struck by a large object and I was instantly on my back on the cool tile
floor. I knew immediately that I could not stand up. Slowly, carefully,
backward out the door and across the bedroom, where I could reach a
phone and call 911.
The paramedics talked to me on the phone. They told me they'd have to
break down a door to rescue me and asked me to choose front door or back.
I heard breaking glass, men's voices, and, before long, I was placed on
a stretcher and carried down my very steep stairs to the cold outdoors
"Two things I need you to get," I told them. "My guide dog and my iPhone."
Later, there would be a stretch of hours when I remembered none of this,
but in that window of crisis, with no one but me to advocate for me, I
directives. I told them how to fasten my golden retriever's guide
harness and told them where the iPhone and its charger were located. In
I called my daughter 1,000 miles away so that someone knew where I was
It turned out that my left femur, the longest bone in the body,
compromised by cancer a decade earlier, had snapped and displaced. I
spent eight hours
in the emergency room, during which time my surgeon explained to me that
serious reconstructive surgery was scheduled for the next day. A metal
eight inches long would be screwed to my bone and wired to my hip. The
recovery period, during which I would be unable to bear any weight on
would last about three months.
Nothing To Do with Blindness
Like many AccessWorld readers, I am a seasoned veteran of blindness. I
mastered my alternative techniques long ago and think about blindness
if at all.
I live alone, manage my own home and work life, travel independently
with a guide dog or white cane, and have a delectable array of
to make everything from writing a book to color-coordinating a room
manageable without sight.
My injury had nothing to do with blindness. My getting to the phone in a
familiar environment didn't either. Directing the paramedics to get my
phone was, if anything, easier for me as a blind person because I know
how to use my words to describe objects and their locations.
Once I was in that hospital, however, my familiar ground was gone. My
daughter had immediately called two close friends who met me at the
and they told me that, from my blurred state of shock with morphine
added, I repeatedly asked, "Where am I and how did I get here?"
Of course. As blind people, independence is deeply rooted in our ability
to take control of our own lives. Essential to taking control is the
of "Where am I and how did I get here."
I was in the emergency room for eight hours before a room in the Joint
and Spine Center of the hospital became available. About halfway through
my brain cleared and I became aware that I needed to be alert, to be my
While my blindness and hearing impairment are inconsequential to me on a
daily basis, they were front and center to these medical professionals
not know me. Advocating for myself was a matter of survival.
My gratitude is abundant for many things that occurred that traumatic
day, but two particularly fortunate facts were that I was in a large,
flat room rather
than on a staircase when my femur fractured, and that my hearing aids
were in my ears. Without them, communicating with paramedics or
personnel would have been next to impossible.
I had been in shock. I was in excruciating pain. I was told not to sit
up or move my leg in any way as I could further displace the broken
and an IV drip of medication gradually returned my lucidity and I knew
communication was key.
A first step toward self-advocacy was to ensure that my hearing aids
could stay in my ears before, during, and after surgery. Without them, I
I might miss questions or information in preparation or recovery.
Permission was granted. As it turned out, I never took both hearing aids
my three-week hospital stay. Not being able to see people come and go, I
knew I needed to hear them.
Next was establishing a certain style of communication with staff. While
being transported to my hospital room, I began what would be my
tool throughout my stay: engaging each person in dialogue and asking
questions. What floor are we going to? What is the room number? What is
the name of
each drug you are asking me to take and what is its purpose? (I happen
to have a high sensitivity to all medications, so many routine doses
in these preliminary conversations, which helped me maintain clarity
while also building relationships with medical staff).
And about that medical staff. When you are in the hospital, a steady
stream of people come and go, with shifts constantly cycling nurses,
assistants, doctors, physical therapists, occupational therapists,
social workers, and housekeepers on and off duty. They might wear
different colors and/or
name badges, but for me, a blind person who doesn't have particularly
stellar voice recognition skills, asking people to identify themselves
key factor in maintaining my quality of care and wellbeing.
At the foot of my bed was a monitor that displayed various kinds of
constantly updated information specific to my treatment. Information is
advocating for oneself. The kinds of information updated at the foot of
my bed included the name of my nurse and personal care assistant, my
physical and occupational therapy, meal times, and special events
available to patients (such as healing touch or yoga.) It was all right
there for me
to read at any time, but in print and therefore completely unavailable
Keep it Light
Whether you are an introvert or an extrovert, keeping a running dialog
going in this kind of situation is, integral to survival. Sometimes I
in a straightforward way: "Can you put a note in my chart for staff to
identify themselves when they come in? I'm good at being blind, but
never did very
well in the voice recognition department." Or, "Can you read my board to
me? They haven't put one up in braille yet."
In other words, I was clear about my needs, but tried not to communicate
those needs in any way that might be perceived as strident or critical.
I was there, as you recall, because my femur had fractured. I had had
serious reconstructive surgery, and had to learn new skills like how to
safely from the bed to the wheelchair and from the wheelchair to the
toilet or shower bench, how to stand up on my one good foot when
necessary and not
lose balance, and much more.
Even though my being there had everything to do with my leg and nothing
to do with my blindness, rare was the nurse or aide who did not ask,
what can you see?" Again, I tried to keep it light, but doing so and
remaining patient wasn't always easy.
I frequently said things like, "I see with my hands. If you put my hand
on it, I will see where it is." If accompanied by a relevant
explanation was generally pretty effective.
I quickly learned to make sure everything I needed was within reach
before a newcomer left the room. If a technician came to draw blood and
moved my laptop
out of the way to reach my arm, even though it was six inches away, that
laptop was essentially invisible to me. I learned to make quick checks
the emergency call button, my iPhone, laptop, and water pitcher each
time I returned to my bed or wheelchair from the bathroom or the
gym, or after any staff person had come to call. When moving about is
next to impossible and a needed object has been moved from, say, the
table on the
left side of the bed to the table on the right, locating it is
problematic for someone who can't see. I found that by routinely
checking and interacting
with staff about this environmental checklist, people learned and became
much less likely to inadvertently move objects from one place to another.
Payoff in Wellness
While it might sound a little exhausting (and sometimes it can be), my
continually engaging in conversations with all those responsible for my
me to focus on getting stronger and getting well. Even while rooted in a
hospital bed, unable to move without assistance, we can still advocate
control our own environments to a point, and thus maintain our
independence. The physical therapist who was at first troubled that I
had no physical eyesight
was laughing with me as I "drove" my wheelchair down the hall. Staff who
began noticing that I was constantly using my laptop and iPhone
on to texting me my therapy schedule every evening as an alternative to
expecting me to read that inaccessible monitor at the foot of my bed.
The doctor who discharged me told me that I was being released at 18
days rather than the anticipated 24 because I was "so fiercely
independent" and determined
"not to allow a disability be a disability." Interpret that as you will,
but I believe what actually facilitated my speedier release was that by
for myself, I took the emphasis off my blindness and put it where it
belonged: on my accident, surgery, and recovery. The payoff was that
of the medical team learned something about blindness in the process and
I was able to get home for Christmas!
More information about the NFBNJ-Seniors