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How it feels to be a Mayo patient who is blind -- in the words of a Mayo student

In a first-person essay published by the journal Mayo Clinic Proceedings, Charlotte Brown, a Mayo Clinic graduate student who is blind, describes a demorializing morning seeking care at the world-reknowned medical center -- the kind of experience that could happen at any medical center. The article outlines a framework for training of staff in healthier interactions with the visually impaired.

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The five plus two levels connecting the Mayo Gonda and Charlton buildings. 2015 photo.
Rochester Post-Bulletin Photo
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ROCHESTER, Minn — Mayo Clinic utilizes the expertise of Charlotte Brown in a variety of complex assignments.

As part of her enrollment in the Clinic's Post-Baccalaureate Research Education Program, the Texas native with a master's degree in neuroscience studies under a team performing high-level research on pediatric brain cancer.

But on the day last year when Brown delayed her trip into the office to keep a medical appointment for herself, her professional competency and personal autonomy were given short shrift thanks to a host of wrong assumptions about something else in her biography.

She is blind.

Brown, who is 25, recently explored that frustrating experience in "Medicine's Blind Spot," a provocative, bracing, often-humorous first-person essay published last month in the academic journal Mayo Clinic Proceedings.

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In reflective and understated prose, Brown's two-page recounting of how it can feel to visit Mayo while blind describes a withering gauntlet of awkward gestures and diminishing small talk during her unhappy role-switch from worker to patient.

Through a series of sometimes throat-catching examples, Brown details a day that started like any other — picking out professional wear, applying makeup, fixing her hair — before stepping out of her apartment and walking 20 minutes to the appointment.

She only stopped once, she writes, giving directions from memory to an elderly woman trying to find a nearby clinic building.

But things took a turn for the worse on her arrival at the clinic, where Brown is told "You don't even look blind" by a cheery person at the check-in desk. ("What does that mean?" Brown thinks to herself. It's a great question.)

Having turned away a clipboard to explain the personal details of her visit, Brown is asked to verbally provide the nature of her medical concern at the busy entrance. Could they possibly discuss it off to the side, Brown asked?

The piece goes on to describe how a nurse who was sent to retrieve her simply grabbed her by the arm, "like a dog being dragged to the vet."

Handed a gown in the examination room, Brown was asked if she could dress herself, then, shockingly, if she could be left alone.

"Yes," she writes of her reply. "I am not afraid of the dark."

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It's one of many small flashes of humor that sparkle again and again in Brown's writing, quiet asides that offer a too-short respite from the mounting weight of the experiences described.

Left alone on the exam table, she notices she has goosebumps on her arms and legs. "The room is an appropriate temperature," she writes. Rather, "it’s the physical manifestation of a fear you don’t read about in biology textbooks ... the visceral fear of being treated as inferior."

The verbal thumping continues following the arrival of her physician, who assumes Brown lives with others, needs a ride into the clinic, and who does not ask before placing a cold stethoscope on her chest and hands on her throat.

“That’s so inspiring," Brown is told of her job in the lab. "I applaud you just for getting out of bed. I don’t think I could possibly do that if I lost my eyesight. ... That probably makes your boss so nervous!”

Brown describes smiling brightly as her doctor finally excuses herself, but then fighting tears as she changes into her suit.

"Embarrassment, frustration, and exhaustion all ensue," she writes. "The day has hardly begun and my bank of mental energy has been ransacked."

It's a devastating comment card for a facility that prides itself on placing the needs of the patient first, yet Brown is quick to add that such experiences "are not out of the ordinary" in health care, and "rarely if ever due to malice. It is just a predictable result of a void in medical education."

In an effort to provide that guidance, her article is accompanied by a framework for medical centers seeking the training of staff in how to accommodate patients who are blind.

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Contacted via email for her thoughts, Brown is reflective.

"I imagined myself in a white coat and asked how I could make the same mistakes," she wrote. "The answer: if I simply didn't know any better. ... There are no villains in this story, only learners."

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Charlotte Brown, a student in the Mayo Clinic Post-Baccalaureate Research Education Program and author of a recent essay on blindness in medical settings, with her first guide dog Vader.
Photo courtesy of Mayo Clinic.

She calls her colleagues "incredibly supportive" of the essay, adding that "Mayo is a wonderful place filled with people who genuinely love to see others succeed. We are a team."

"She's a great writer, as you can see," says Dr. Sharonne Hayes, a cardiologist and mentor on Brown's piece, and former director for diversity, equity and inclusion at Mayo. "I think these first-person narratives that make us all walk in someone else's shoes are so valuable, particularly for those of us in health care."

"Just to hear the voice of someone who talks about it in a way that makes us completely understand it. That can motivate us to learn about what we don't know, and change our behavior and processes."

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Paul John Scott is the health reporter for NewsMD and the Rochester Post Bulletin. He is a novelist and was an award-winning magazine journalist for 15 years prior to joining the FNS in 2019.
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