Self-Advocacy in the Healthcare System
Blindness and Medical Facilities, Take Two: More About Advocating for Yourself in a Medical Situation
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 blindness.
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 acceptable?
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 recovery!
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.
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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