[Nfbc-info] Advocating for Yourself in an Emergency Medical Situation: Advice for People with Visual Impairments

[Frida Aizenman]

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

Deborah Kendrick

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, 
I scooted

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 
and the

waiting ambulance.

"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 
gave clear

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 
the ambulance,

I called my daughter 1,000 miles away so that someone knew where I was 
going.

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 
plate about

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 
that leg,

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 
very little,

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 
technological tools

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 
dog and

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 
emergency room

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 
basic awareness

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 
that time,

my brain cleared and I became aware that I needed to be alert, to be my 
own advocate.

While my blindness and hearing impairment are inconsequential to me on a 
daily basis, they were front and center to these medical professionals 
who did

not know me. Advocating for myself was a matter of survival.

Hear This

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 
emergency medical

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 
parts. Time

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 
explained,

I might miss questions or information in preparation or recovery. 
Permission was granted. As it turned out, I never took both hearing aids 
out throughout

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 
signature survival

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 
were adjusted

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, 
personal care

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 
was another

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 
essential to

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 
schedule of

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 
to me.

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 
asked questions

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 
transfer

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, 
"So, exactly

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 
demonstration, that

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 
to locate

the emergency call button, my iPhone, laptop, and water pitcher each 
time I returned to my bed or wheelchair from the bathroom or the 
physical therapy

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 
care enabled

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 
for ourselves,

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 
eventually caught

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 
advocating

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 
many members

of the medical team learned something about blindness in the process and 
I was able to get home for Christmas!

http://www.afb.org/afbpress/pubnew.asp?DocID=aw180302