Top article of the week – Self-Advocacy in the Healthcare System

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Self-Advocacy in the Healthcare System
Blindness and Medical Facilities, Take Two: More About Advocating for
Yourself in a Medical Situation
Deborah Kendrick
In the March issue of AccessWorld,

I wrote about an unplanned hospital stay and the lessons I gleaned from
that experience. Two surprises ensued: first, I wound up returning for an
even longer hospital-and-rehabilitation tour of duty and, second, I found
out that many readers wanted to talk about navigating medical situations as
people with visual impairments or blindness. Here, then, is what we might
consider the second part of the medical adventure, in which I’ll share some
of my own experience along with what readers and others have to say. The
outcome, we hope, will be some useful preparation for all of us for the
next stressful medical encounter.
My Repeat Performance
My initial hospital and rehab adventure began with the sudden snapping of my
left femur. The bone had been weakened several years earlier by radiation
and aggravated eight months earlier by hip replacement surgery. A
prosthetic hip is like a ball on a stem. The stem is inserted into the
femur, the longest bone in the body. The procedure is akin to threading a
peg into a pipe, and my “pipe” was fragile and broke unexpectedly. The
repair that was done involved an eight-inch metal plate and several wires.
After eight weeks of mobility in a wheelchair, an x-ray determined that the
bone was broken yet again, the metal plate was at a very unhealthy angle,
and all wires were broken.
The original incident with follow-up hospital stay was in Ohio. The failure
was discovered in Florida. Consequently, finding a surgeon in Florida to do
the reconstruction was the best plan. I did find a surgeon who specializes
in hip and leg reconstructions, and he took my case. Some might find the
medical details gruesome and some might find them fascinating. If you are
the first sort, skip the next paragraph!
Since the femur had broken at exactly the point where it needed to connect
to the prosthesis, repairing it at that juncture (as the first surgeon had
done) wasn’t the best plan. The new surgeon’s approach was to tear out the
now ten-month-old prosthesis (no easy feat) and replace it with one that
had an extended “stem.” The typical hip replacement stem, when inserted into
the femur, ends near the top of the thigh. My new one ends at mid-thigh. In
addition, a cadaver bone was placed over the section of femur most damaged
by radiation and fractures (about 2.5 inches). And finally, the entire bone
was wrapped in heavy cable to hold it in place.
This second surgery meant spending one week in hospital followed by several
in a short-term rehabilitation facility. In Ohio, I had a network of
friends who visited every day and kept my spirits high and my focus off
medical issues. This time, however, I was in a state where I knew virtually
no one and thus had few diversions and no one to help me navigate the
unfamiliar human or mechanical terrain.
The night before my surgery, I found genuine solace in Googling the hospital
and surgeon. When I found the hospital on a “100 best” list compiled by a
major news organization and the surgeon identified as a respected teacher
and innovator in his field, my optimism regarding outcome soared!
In the operating room, I made sure everyone knew I wore hearing aids and
secured approval to keep them in. I explained that, because I am completely
blind, I obtain much vital information by hearing. Without the hearing
aids, that would not be possible.
My first day after surgery was spent in the intensive care unit. Once I was
aware of my surroundings, I realized that my space wasn’t separated from
the rest of the unit at all. The only thing between me and staff, visitors,
and other patients was a curtain. Consequently, it was impossible for me to
distinguish whether people were talking to me or to someone else. It sounds
silly, but when you are already vulnerable and unable to move, this kind of
thing adds yet another layer of stress and vulnerability.
The one piece of technology I had with me even in ICU was my iPhone. I’m not
sure whether I made many calls or sent messages during that phase, but I
clearly remember the sense of connection it gave me to have a working phone
in my hand.
Once I was returned to the orthopedic floor, I connected my laptop as well.
Because the greatest problems connected with blindness are, as much in a
medical facility as anywhere else, mostly related to myth and
misunderstanding, I came to appreciate my technology in its ability to
function as a bridge to understanding. A nurse or aide or physical therapist
who might at first see a blind person as strange will generally relax a bit
upon seeing a tablet or smart phone or other device that is so familiar.
Being a bit geeky, in other words, was an advantage in this environment.
Of course, my access technology had plenty of practical uses as well. In
addition to continuing to do my job after the first few days, my technology
solved a variety of small problems.
In the short-term rehab facility, I continued to find random pages of print
on the foot of my bed, the chair, the table. Usually, the KNFB Reader app
identified these for me as a calendar or note about my recovery plan. When
no one responded to my call light (which happened frequently), I took to
wheeling myself to the doorway of my room and scanning the hall with
TapTapSee to see if there were any staff nearby.
What Others Have to Say
We heard from AccessWorld readers who wanted to use the article to post in
medical employee areas or as a handout in college classes. Most
importantly, however, we heard from readers who had experienced the
“blindness meets medical situation” up close and personally, either for
their own health crisis or that of a loved one. The input was unanimous:
everyone wants more information on this topic and more of a road map for
navigating and advocating in these troubled waters.
One reader who wrote to us was Nancy Irwin, an access technology instructor
in South Carolina. Her husband, Billy Irwin, had gone to the emergency room
more than once and each time was perhaps more stressful than the one before
it. Both Nancy and Billy are blind.
Although they had gone together one of those times, the worst was when he
went alone in an ambulance. Upon arrival, Billy was seated in a wheelchair,
checked in, and pushed aside. Unclear about his surroundings or what might
happen next, he was neglected for three hours. When he vomited on the
floor, he says staff was angry with him.
Nancy caught up as soon as she could, and both reported that once he had
someone with him, the situation was somewhat diffused. The couple began
communicating with one another and others around them. Other patients, they
say, became involved in advocating for a guy who was just plain sick, like
everyone else waiting, and who needed additional information due to
When Billy was admitted, trays of food were sometimes delivered without any
verbal information announcing the fact.
Both say that the more they interacted with nurses, the more manageable the
situation became, but it was never easy.
Ironically, Billy works as an emergency manager for amateur radio operators
in the area, disseminating emergency information to police, fire, and
medical responders, so he is no stranger to the emergency scene.
“The problem,” Billy says, “is that people just have no idea how to deal
with a blind person. They need training and they need exposure to real
blind people.”
The only marginally “accessible” piece of technology made available during
Billy’s hospital stay was the combination TV remote and call light. The
button marked with the braille “n” on the remote was the one that would
summon a nurse. Ironically, the remote was not otherwise accessible, but the
couple did contact a nurse who spent the time to familiarize them with it.
Lisa Salinger, an access technology trainer and administrative assistant for
BlindAlive, has been navigating another kind of medical facility
experience. When she realized one morning that her housemate and friend was
having a stroke, she called 911. After the hospital stay, her friend was
moved to a rehabilitation facility for therapy and Lisa was the family
member who came day after day to bring food, encouragement, and
companionship. Gradually, Lisa taught at least some nurses and nursing
aides how to interact with blind people.
Finding printed menus, calendars, or notes on her friend’s bed, Lisa took
pictures to read them with her iPhone app.
At times, when there was no one available to assist with a medical procedure
in time, Lisa motivated staff to respond by offering the alternate choice
that they teach her how to perform the task needed.
Similarly, when Billy Irwin grew tired of waiting for staff to disconnect
his IV pole every time he needed to use the bathroom, he found someone to
teach him how to disconnect it himself.
Like Lisa and Billy, others find workarounds to getting things done in a
medical facility and/or gradually gain the attention and respect of one or
two staff members who will provide needed information or hands-on
demonstration. Sometimes, though, the “soft” approach isn’t sufficient.
Tom Tobin, an Ohio fundraising professional and AccessWorld reader, recalls
a time when medical professionals had to be dismissed because there was
such a lack of respect. When he was having his insulin pump installed over
20 years ago, the attending physician showed such a lack of regard for the
patient’s ability to manage and understand his own diabetes that Tom fired
him and found another.
That Mind-Body Connection
Every stress-filled example readers have shared with me struck at least one
chord with my own experience. From not knowing food was in the room when
you are starving, to missing the printed information shouting at you from
all directions, to being a visitor and finding the elevator buttons do not
have braille on them–each minor frustration interferes with wellness.
Healing the body is assisted or hindered by the patient’s state of mind,
and when a patient feels discounted or ignored due to low vision or
blindness, the quality of their care is diminished.
So … what can we do to make interactions with medical facilities more
Advocate, Advocate, Advocate
One thing most of us as visually impaired people can do is talk! I was so
unprepared for what happened when first transferred from the Florida
hospital to the short-term rehab facility that I was temporarily
traumatized. I was delivered, via wheelchair, to a room and left. No
orientation or familiarization. No assurance of someone coming back in some
amount of time. I had no idea where my belongings were, where the call
light or the room phone were, or where I was! I wasn’t very strong yet nor
was I adept at propelling the wheelchair from place to place. Eventually, I
reminded myself that I could think, that I needed to be my own
cheerleader/advocate and, slowly, tentatively, began moving about the room
to explore. Suffice to say, the situation improved from there, but there
were many more moments of this variety. The longer I was there, the
stronger my conviction that I needed to depend on myself to get what I
needed. Usually, this was accomplished with a smile, but sometimes, the
gentlest among us need to get a bit tougher. Once I began exploring my
environment and getting outdoors (propelling a wheelchair without benefit
of white cane is a learning experience in its own right), my attitude
improved dramatically. My desire to get out of rehab probably expedited my
A Little Help From Your Friends
There was a stark contrast between my hospital experience in Ohio, where I
had the support of friends, and the one in Florida, where I was pretty much
alone. If you know ahead of time that you are going to be in a hospital or
medical facility, try to line up support from family and friends in
advance. Even a casual friend or acquaintance will look out for your
individual needs more than relying exclusively on staff who have dozens of
other patients needing attention.
Use Your Technology
I kept my iPhone with me at all times and usually my laptop or braille
notetaker as well. This kind of technology can serve as tangible evidence
that you are more like than unlike the medical staff with whom you are
interacting. Asking about any technology in the room was beneficial, too. As
the Irwins pointed out, once they found someone willing to provide a
verbal/tactile tour of the remote, they were able to enjoy TV shows and
thus connect in another way with staff as well.
Explain Those Techniques
When I began using a walker in physical therapy, I asked when I could use it
on my own time, in order to build strength and practice. For several days,
my request was denied. Finally, I realized it was blindness related. The
therapist was afraid to allow me to practice walking without assistance for
fear I would crash into a wall or trip over a chair. Patiently, tediously, I
explained how I navigate a familiar environment. I had to demonstrate
repeatedly–“I touch the wall to confirm my location …” and “I touch the
door frame before turning to confirm that I am allowing sufficient space
for the walker and me …” and so on. I found myself explaining frequently
about muscle memory and echolocation, but the payoff was improved
interaction with medical professionals and decisions based on recovery
rather than misconceptions about blindness.
Use Your Power
You or your insurance company is paying for your care. If the care is
compromised by misunderstandings about your ability as a person who is
blind, change it. If your cellular service was inadequate, you would change
companies. If a medical situation becomes absolutely untenable, change it
as well.
Rx Round-up
Being in a medical facility where others control many of your simplest
activities is stressful for everyone. Adding blindness to the mix increases
confusion on both sides: the patient with the visual impairment needs
additional information and the medical professional often come to the
bedside with ill-conceived notions of a blind patient’s capabilities. There
is a profound need for training in these facilities. Perhaps some readers
will pick up this challenge and initiate trainings in their communities. In
the meantime, be your own advocate, take a friend or family member if
possible, and depend on your technology to keep you connected and help
bridge the gap between you and your medical team.

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