Horses, Zebras, and the Secret Medical World of Blind People

As well as I can calculate, I’ve undergone at least twenty major surgeries. To be clear, let me define my terms. In order to be classed as major, a surgery must meet all of the following criteria:

1. Before they operate, I’ve have to be asked if I have a living will.

2. I have to be asked if I’m an organ donor.

3. I have to be asked to count backward from ninety-nine and I have to be unconscious for more than three hours.

4. And, most importantly, it’s major surgery if it happens to me and minor surgery if it happens to you.

I’m telling you this to establish my credentials. I’ve had far more than my share of dealings with the medical establishment, especially ophthalmologists. The large majority of them have been great people, both professionally and personally, but interacting with the medical establishment as a blind person can be a unique experience.

I touched on this several years ago in a post, Tell Everyone about Your STDs and IV Drug Use ,but was just scratching the surface. Today, I’d like to lift the curtain a little more.

Of course, most of the experience we have with doctors are the same as everybody else, however, there are some important differences.

Easily the largest percentage of patients whom doctors will see with visual impairments are older. Father Time rarely comes alone. He usually brings some of his friends like arthritis or cancer. Frequently, one of the tools the physician relies on to help diagnose the possible existence of such conditions is the patient’s vision. Trying to pinpoint a problem by asking, “Have you noticed any changes in your vision” or “Has that thing on your arm always been that color?” aren’t going to be very helpful.

A doctor recently told a friend, who has been blind since birth, that she was concerned that he was at high risk for kidney cancer and, if he detected blood in his urine, he should immediately contact her office since it would be necessary to remove the kidney as soon as possible. I’m probably simplifying the medical history, but you get the idea. He is a seventy-five-year-old man who lives alone. Not a good situation.

Fortunately, this story has a happy ending. As my friend explained, “Needless to say, I was uncommonly attuned to something I’d never paid much attention to before and was extremely lucky. Someone who was newly blinded would have never detected anything different. The change was exceptionally subtle; but, in the end, I felt there was blood, and the kidney was removed in time.”

There are exceptions, but, generally speaking, the human body is pretty much under warrantee until about forty. It’s an oversimplification, but it’s the job of the doctor to help prevent the system from breaking down and, when it does, repair it.

Let me say again that the large majority of my experiences with the medical establishment have been positive. However, there are some noteworthy exceptions. To borrow from the children’s nursery rhyme, when my experiences are good, they are very, very good and, when they are bad, they are horrid. When I wrote a few years ago about

The Dumbest Questions I’ve Ever Been Asked As a Blind Person

I don’t think It’s entirely accidental that almost one-third of the comments I listed came from encounters with medical personnel.

None of us want a negative experience with the medical establishment, but such encounters are especially problematic for the blind or visually-impaired patient for two reasons.

First, because med students are trained, when hearing hoofbeats, to look for horses and not zebras, they are likely, when first being introduced to a blind patient, to think of you as a horse. They are taught, when making a diagnosis, to first go with the expected, horses, and not the uncommon, zebras. Make a list of the negative attributes associated with vision loss and that’s likely what they’ve experienced with their previous patients. They wouldn’t be human if, when first introduced to a blind patient, they didn’t start by thinking of you as a horse. Every time you meet a new doctor or nurse, it’s your job to demonstrate that you’re a zebra and that you don’t fit the stereotype they may have formed from dealing with previous patients who are visually-impaired.

In doing this, I’d pass along an observation I recently heard from a friend who works in a hospital. She said, “All day long, every patient you see complains. Some complain a lot; some complain a little. But they all complain. This only makes sense. After all, that’s why they’re in a hospital.” I’m sure the same thing is pretty true in a doctor’s office.

The point is that, if you want to set yourself apart from all the horses that stampede through the examining room during the day, it’s important to make an extra effort to be a likeable zebra. As my friend said, “Patients forget that doctors and nurses are people too, and it’s only human nature that they’re going to go a little more out of their way for the patient who is just a bit more likeable.”

Second, medical schools train doctors how to prevent their patients from losing their vision, not how to counsel them once they have lost it. Rare is the doctor who really knows much about how to adjust to vision loss. Generally speaking, patients are left to flounder on their own once they’ve received the diagnosis.

This is not said to demean the medical profession; these are just the facts of life. We expect the surgeon to do surgery but we don’t expect them to do the physical therapy afterward. Medical schools train their students to fix things but, at least as far as patients with vision loss are concerned, don’t give any guidance as to what to do when they are out of therapeutic options.

A quick illustration. Some years ago, a local ophthalmologist told a mother that her son was going to be blind, that there was nothing that could be done to save his vision, and, therefore, the only place he could be educated was the State School for the Blind. His medical opinions were completely correct; his rehabilitation advice, while well-intentioned, was spectacularly wrong.

As it developed, the young man was mainstreamed in his local public school system, was able to connect with an outstanding teacher of the visually impaired, and thrived. Because of that, today he is employed as a successful professional, a course he likely would not have pursued had his mother followed the doctor’s advice, at least in our state.

There is a positive footnote to this generalization about medical professionals, however. Two of our VIBES volunteers, one who worked with us in our beginning and one who has worked with us for the last four years, have, or will be, optometrists. The years they have spent with VIBES members, their families, and vision professionals has given them a richness of perspective about vision loss that can never be conveyed by their professional training. It’s gratifying to know that their patients will not only receive excellent medical care but will also have the rare opportunity to be treated by professionals who will be knowledgeable of the world they will face and the options they will confront should they be challenged by serious vision loss. They will not automatically assume that everyone with serious vision loss has to be a horse.

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