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

Thu Apr 27 01:04:03 UTC 2017

Yes, Debra Kendrick is an excellent writer and her stories are always
interesting.
See you at the National Convention.
Frida
On 4/26/2017 5:02 PM, Joy Stigile via NFBC-Info wrote:
> Dear Frida,
> Thanks so much for sharing this fascinating article.  I believe it is going
> to be very beneficial to all of us in The National Federation of the Blind.
> Debra Kendrick is an excellent writer and her stories are always
> interesting.
>
> Warmly, Joy
>
>
> -----Original Message-----
> From: NFBC-Info [mailto:nfbc-info-bounces at nfbnet.org] On Behalf Of Frida
> Aizenman via NFBC-Info
> Sent: Wednesday, April 26, 2017 1:32 PM
> To: nfbc-info at nfbnet.org
> Cc: Frida Aizenman <nfbfrida at gmail.com>
> Subject: [Nfbc-info] Advocating for Yourself in an Emergency Medical
> Situation: Advice for People with Visual Impairments
>
> 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
>
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