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Stanley Wainapel, M.D., M.P.H.

Stanley Wainapel, M.D., M.P.H.

A physician and researcher turns his blindness into an opportunity to help patients

By Ginger Skinner

When Stanley Wainapel, M.D., M.P.H., gets an email, he “reads” it by listening to the synthesized voice of famed theoretical physicist Stephen Hawking, Ph.D. “I would be absolutely sunk without this,” Dr. Wainapel says of the text-to-speech software that also helps him draft emails and use the Internet and—for more than two decades—has aided him in caring for his patients. “This technology is a substitute for my vision.”

Dr. Wainapel learned at age 8 that he had retinitis pigmentosa, a rare retinal disorder that causes blindness over time. While attending the Boston University School of Medicine, he learned that he had a rarer condition than originally diagnosed called choroideremia, which affects an estimated 1 out of 100,000 people, mostly males. After graduating and completing his residency at Montefiore in 1974, he worked at hospitals in Boston and in New York City, including Beth Israel Medical Center and what is now Mount Sinai West, for 20 years before he began to lose his vision in his mid-40s. Today, at age 74, he can “see almost nothing.”

For the past 25 years he has been a professor in the Arthur S. Abramson Department of Rehabilitation Medicine at Einstein and clinical director of rehabilitation medicine at Montefiore, and he credits sensory substitution—along with a good memory and his own experience with physical disability—with helping him gain deeper insights into his patients’ health.

Throughout his medical career, Dr. Wainapel has advocated for disability rights and has published dozens of journal articles on the topic, ranging from the physiological effects of acupuncture and yoga to the portrayals of disability in Charles Dickens’s novels. Dr. Wainapel also served as president of the American Society of Handicapped Physicians in the early 1980s and as president of the New York Society of Physical Medicine and Rehabilitation in 1991.

In a recent conversation with Einstein magazine, Dr. Wainapel discussed how his loss of sight continues to shape how he approaches life and medicine.

How would you describe your field of medicine to someone who’s not familiar with it?

When a person has an impairment, there’s an organ system or body malfunction. You’re left with a certain physical functional challenge, and that’s called a physical disability. In rehabilitation medicine, we work to improve function by utilizing medical treatments, physical or occupational therapy, and acupuncture. Our goal is always to maximize a person’s function—not just their physical function, but also their vocational capacities and emotional quality of life.

Given your vision loss, how do you conduct a typical physical examination?

Technology is an invaluable tool for me. I have a patient’s demographic information, medical record, background on when I last saw them, and all of my notes; my screen-reading software dictates that back to me.

I also rely on sound and touch. If I’m doing a physical diagnosis, there’s palpation; auscultation, which is listening with a stethoscope; and percussion, which is using a finger to tap for different kinds of sounds. If I have a patient who has an underactive thyroid gland, I can still feel if the thyroid is enlarged (that’s palpation) or hear if the person has a very hoarse voice or a low voice. I can ask them if they’re losing hair or have an intolerance to cold. With other fine-tuned senses, I leverage these substitute ways of making a diagnosis.

I find that, having been a patient myself, I can relate to my patients’ experiences and share my vulnerabilities. I think my patients are, in turn, more willing to show me their own.
— Dr. Stanley Wainapel

Doctor feels man's hand Stanley Wainapel, M.D., M.P.H., uses his other fine-tuned senses, such as touch and hearing, to help him make a diagnosis as he examines a patient in his Montefiore office.

Are there ways in which having a physical disability has changed how you approach your relationship with patients?

Early on, I didn’t realize that patients within my field of physical medicine and rehabilitation could, in a way, see themselves in me. I find that, having been a patient myself, I can relate to my patients’ experiences and share my vulnerabilities. I think my patients are, in turn, more willing to show me their own.

Your presence in the field has helped break down barriers for people with disabilities who wish to enter the medical field. Do you have any advice for medical students with disabilities?

There will be barriers; some of them are physical and more are attitudinal. Many people don’t think about what a person with a disability can do but instead focus on what the person can’t do. For instance, when people see someone with a severe hearing impairment, it may not occur to them that the person might be able to lip-read. A person’s limitations are not flaws of character; they’re aspects of character.

Doctor feels female patient's neck Dr. Wainapel uses a technique called palpation to examine a patient’s neck to determine whether she has an enlarged thyroid.

You’ve worked in Boston and other places. What drew you back to the Bronx?

In the early 1990s, my visual acuity had begun decreasing quickly and exponentially. Within a couple of years, it was less than half the level it was before, and I began needing my cane more. I had lost a lot of self-confidence in being able to continue on my professional path. Through the National Federation of the Blind—and on the advice of a friend who has been blind since birth—I began using a computer with screen-reading software and started to gradually gain back my confidence.

At that point, a former resident of mine and long-standing friend, Avital Fast [M.D.], had just taken a leadership role in Montefiore and Einstein’s combined clinical and academic program in physical medicine and rehabilitation, and he asked me to join him. Since I’ve been back in the Bronx, my colleagues have been supportive by providing me with the equipment, software, and tools I need—and have continuously trusted that I could be productive in a high-powered clinical and academic atmosphere. Here I am, more than a quarter century later, still working full time in clinical care (I have 70 or more patients every week), writing articles and book chapters, and teaching.

Outside of medicine, you are a classical pianist. Do you still play?

It’s one of the great joys of my life. I play complex pieces, and my virtual piano teacher has to teach them to me gradually. I know the sounds, but I can’t read the page. He’ll say, “Here’s this chord. Here’s what you’re doing in your right hand. Here’s what you’re doing in your left.”

I think of it as brain work. I find that there is a lot that I can do in my head—whether it’s traveling by daydream, listening to music, or taking piano lessons. I smile from the fact that I am still growing through the wonderful challenges of life.

Man in white coat typing on computer keyboard Text-to-speech computer software enables Dr. Wainapel to draft emails and use the Internet in his Montefiore office.
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