Here’s a story from a weekly newsletter I receive and I think we should all read and learn from this article.
*8) Self-Advocacy in the Healthcare System
by 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.
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!