Braille Monitor                         January 2021

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Navigating Healthcare When All They Can See is that You Can’t

by Deborah Kent Stein

Deborah Kent SteinFrom the Editor: Debbie Stein is one of the best writers I know, and she is selective about what she reads. The review that appears below reflects her talent as a writer, her judgment as a reader, and the superb talent of another writer named Deborah, that being the author Deborah Kendrick.

"If you happen to be blind, chances are you are familiar with the augmented chord frequently played in the healthcare sonata," writes Deborah Kendrick in her introduction to this highly useful and charmingly written little book. "Whether you are in the MinuteClinic line for a flu shot, your primary care physician's office for a wellness checkup, or at the orthopedic center for the pre-op education prior to knee replacement, your vision—or lack thereof—is likely to get attention." In Navigating Healthcare When All They Can See Is that You Can't, Deborah Kendrick takes the reader through a series of scenarios, offering practical suggestions for negotiating each one gracefully and effectively as a blind person. The book aims to empower blind readers by reinforcing the mantra, "Nothing about me without me."

Deborah KendrickWhile Kendrick acknowledges that we are likely to receive a good bit of unsolicited and unnecessary help when we visit a healthcare facility, she points out that in some situations help may be invaluable. For instance, "If you explain to a technician or scheduler that you need details because you are blind, they [may] understand your need for specificity and concentrate to deliver such clear instructions as, ‘When you come in the main door, walk about 20 feet, and there will be a registration desk on your right.’” But she adds, "Of course, sometimes hearing the word 'blind' causes that weird momentary apoplexy in a stranger on the phone and renders them incapable of further useful communication, so there is no guaranteed outcome." As in every other aspect of our lives, it is important for us to turn down unnecessary help politely but firmly and to express our real needs as clearly as possible. "Please remember to smile as often as you can," Kendrick advises. "Make a joke when you can, and remember to say thank you. When the nurse comes in and says, 'Hi, it's Angie,' be sure to thank her for letting you know who she is."
Kendrick also suggests that we as blind patients share a few tidbits about our lives with healthcare staff. When they find out that we took time off from work to come to the clinic today, or when we mention that we'll be picking up our kids from the sitter on our way home, we show them that we are living full and active lives. If we can convey that blindness is only one dimension of who we are, we are likely to enjoy smoother and more effective communication around our healthcare issues.

In a practical vein, Kendrick includes ideas about labeling and measuring medications, filling out forms, and using home healthcare equipment. She lists sources for the purchase of talking devices including scales, thermometers, blood pressure monitors, glucose meters, and oximeters.
In this time of concern about COVID-19, this book is all the more relevant. Whether you are dealing with the healthcare system on your own behalf or as the advocate for a friend or family member, Navigating Healthcare is bound to give you some valuable pointers and bring a few smiles along the way. Navigating Healthcare is available from the National Braille Press.

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