Janet Ingber
My first response when I learned the name of this book was, “Wow, what a great title!” It immediately made me think about my own experiences with the medical profession.
This book provides a wealth of information including what questions to ask, how to advocate for yourself, what medical devices use accessible technology, and, of course, ways to show that just because you are blind, it does not mean you don’t have a brain. Kendrick describes her own firsthand experiences, discussing how she managed different situations, and providing solutions and recommendations.
Kendrick writes with wit and humor throughout the book's introduction and eight chapters. I strongly recommend starting with the intro, since it lays the groundwork for understanding her approach.
Chapter 1: At the Doctor’s Office
Topics in this chapter include choosing a doctor, where Kendrick gives suggestions such as searching online and asking friends. She mentions useful websites for the search. She explains the concierge medicine model, which is a model of healthcare where a patient pays up-front for medical services.
In the Office Visit section of the chapter, Kendrick gives some strategies about interacting with office and medical staff. She describes her approach, which is friendly and not confrontational. However, she reminds us, “If there is one single guiding principle to keep in mind throughout your journey in health care, it is this: You are in charge of you.”
Chapter 2: Outpatient Tests and Procedures
In this chapter, Kendrick has suggestions for what to do when going to a different facility for a test or procedure. One recommendation is to call the facility and get clear directions for navigating both inside and outside. She talks about knowing which tests are being ordered and describes a few common tests including medical ultrasound and MRI. She discusses asking about the equipment being used and also discusses handling situations where you need to change into a gown or some other garment. How many of us have been asked if we need help undressing? Useful suggestions are made about what to do with your guide dog during tests.
The final part of the chapter is about ambulatory surgery. Kendrick writes about the recent increase of ambulatory surgery (rather than in-hospital) and common procedures. She makes an excellent recommendation for when you leave the facility.
Chapter 3: Emergencies
Emergencies can happen anytime and anywhere. Kendrick begins by speaking about types of emergencies and whether to call 911, go to the nearest emergency room, or go to an urgent care center. If you call 911, Kendrick suggests letting the operator know that you are blind at the very beginning of the call. She gives a personal example from when she broke her femur and nobody else was home.
She makes the important point to ask first responders what they are doing. Some responders may not have much interaction with someone who is blind. She offers suggestions for when an emergency room intake staff member asks, “How much can you see?” and advises preparing a brief answer in advance. Another staff situation discussed is how to manage the range of people who come in take care of you. If they do not introduce themselves, ask who they are and what their job is.
The final section of the chapter is about Urgent Care Centers and Minute Clinics. She gives descriptions of what these facilities can treat and the types of medical professionals staffing these clinics.
At the end of the chapter, we are reminded to have contact information on hand, prior to needing it, on what services are available where.
Chapter 4: Hospital Stays
This chapter begins with questions you might want to ask when admitted to the hospital. She discusses an unplanned hospital stay, such as being admitted from the emergency room. She covers making sure you know your location, including floor and room, and asking someone to orient you to your surroundings. Kendrick reminds us to have conversations with hospital staff and that hospital staff may not have any experience with someone who is blind. Even if someone does have experience with patients with vision loss, you should let them know your specific needs. Suggestions include asking staff to knock before entering and identifying themselves when they enter your room. Kendrick points out that each blind person is unique just as every other patient is unique. She adds, “The extra hurdle for us, regrettably, is the need to move past the misconceptions that are all too often held about our capabilities.”
Kendrick discusses advocating for yourself and having an advocate with you whenever possible. She talks about a sign that a hospital member posted over her bed. You will have to read the book to find out what the sign said. Here is a hint: it was incredibly inappropriate.
Kendrick provides suggestions for what to do prior to being admitted for a planned hospital stay or planned time at a rehabilitation facility. These recommendations are very useful and can help make your stay less stressful.
Chapter 5: For Blind Parents and Grandparents
This chapter focuses on when your child or grandchild has a medical emergency. As she does throughout the book, Kendrick gives excellent anecdotes from her own life. For example, she talks about the time her daughter was in the emergency room. She advises, “Stay with the patient every step of the way until you’re given a scientific reason not to.”
She also discusses the importance of choosing a good pediatrician and things to do if your child or grandchild is admitted to the hospital. She reminds us that although the chapter is about children, these same principals apply when you are a caregiver in any relationship.
Chapter 6: Managing Medications
This chapter contains information about labeling and dosing medications. Kendrick provides many options such as using braille labels and En-Vision America’s ScripTalk. She also provides information about measuring correct amounts of liquid medication.
Chapter 7: Using Technology to Narrow the Gap
Kendrick discusses various forms of technology including websites and apps. For example, WebMD is a website and app that provides a tremendous amount of information. She discusses apps that let you read text and learn what is near you as well. In addition, Kendrick discusses apps and devices for monitoring health at home and provides product information for the devices.
Chapter 8: The Art of Knowing When
In this chapter, Kendrick provides some final tips and reminders. She discusses two additional life experiences, one where she was not allowed to do something because staff mistakenly thought she might get hurt because of her blindness, and the other where staff instructions were correct and unrelated to vision.
Conclusion
This is an excellent book whether you have been blind or visually impaired for your whole life or are new to vision loss. Kendrick provides useful information in every chapter, sharing anecdotes and recommendations. Although there is a lot of material, she presents it in a conversational style, making it easy to read.
Book Information
Navigating Healthcare: When All They Can See Is That You Can’t, by Deborah Kendrick, is published in braille, BRF, DAISY text, and Word by National Braille Press. The book is available in hardcopy braille, DAISY, eBraille, and Microsoft Word formats for $12. To have a digital mailed to you on a USB drive, add $2.50.
This article is made possible in part by generous funding from the James H. and Alice Teubert Charitable Trust, Huntington, West Virginia.
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