Bill Holton
Back in my grad school days—so long ago, Statistics class calculations required pencil and paper—one of my class assignments was to interview and profile a disability specialist. My professor was surprised that I didn't focus on someone in the blindness field but instead profiled the director of the Vocational-Rehab Department in charge of the disability I personally most feared: deafness.
Apparently, I am both out of the crowd and part of it. At least according to Deborah Kendrick, fellow AccessWorld contributor and author of the new book, When Your Ears Can't Help You See: Strategies for Blind or Low Vision Individuals with Hearing Loss.. She writes, "Americans are terrified of blindness...Poll after poll, decade after decade, the fear of blindness has ranked on par with or higher than loss of hearing, speech, memory, a limb, or a diagnosis of HIV or cancer."
According to Kendrick, the experience of losing hearing as well as the response to it is not the same for someone with sight as it is for someone who is blind or low vision. Many of the strategies used by the hearing impaired?lip reading, closed captioning, flashing light alerts and the like?involve vision. Just as someone with a visual impairment relies on sound cues and. increasingly, voice response devices, for access and accommodations, those who have both visual and hearing impairments are forced to either Make do with limited and/or fading vision or hearing to help compensate for the other lost sense; or develop and maintain new strategies that involve touch and/or technologies with an even smaller market than devices for blindness or deafness alone and which are, consequently, limited in availability and unlimited in pricing.
The above explains why I am not a part of the crowd when it comes to which disability I fear the most. But I am part of another crowd, one with at least one member. Writes Kendrick, "A quote often attributed to Helen Keller who, of course, had absolutely no sight or hearing after the age of 19 months, is that blindness separates us from things, while deafness separates us from people."
The Journey
Every personal story is different, but I suspect those who have both visual and hearing impairments will find a lot to identify with as Kendrick shares the story of her loss of both things and people.
Her story will be equally familiar to those of us who experience gradual sight loss exclusively, or anyone else with a major loss, because it follows the same trajectory. Denial. "My college roommate mumbled a lot." Scoffing at high school hearing test results that indicated she needed to see a doctor. Bluffing friends, and herself, through gatherings when she couldn't follow the conversation.
The day I was riding my bike full speed down a bike lane and slowed because I couldn't see into a shadow from an overhanging tree, and that shadow turned out to be a moving van, was the day I put away my bike. For Kendrick the acknowledgement came the day she realized everyone else could hear her babies from the front porch, but she could not.
Of course that day when Kendrick, as she calls it, "came out," as hearing impaired wasn't the conclusion of her journey, it was the beginning.
One of the first hurdles she faced was making a good match with an audiologist. Sadly, this took some time. Most were not familiar with the unique challenges of the dually impaired. Others simply made light of it.
Kendrick shares the strategies she has developed over the years to help make better use of the hearing she does have. People with only a visual impairment can also benefit from many of these. For example, as she writes in her "Party Planning" section: "At a party, if you can't hear what others are saying, you can nod and smile for a while, but the effort can be absolutely draining. If you don't have the supporting cast of sight to follow even the tone of the conversation, you can easily wind up as the human bump or lump in the midst of animation." Sound familiar? Or perhaps you've never found yourself at a party responding to someone's question only to realize he or she was not speaking to you?
When in "Decorating for Sound" Kendrick mentions the subtle but nonetheless distracting echo that wood floors can cause in your house I was reminded of a relative's house I disliked visiting because it had no rugs or carpets, which made it difficult to know where I was or to locate voices. Consequently, when my wife wanted to replace our carpeting with hardwood I resisted for several years. We finally compromised, spent more money and selected an engineered wood flooring that featured different width and length planks and a lot of texture, which leaves them as echoless as thick carpeting. So even if your hearing is perfect, as a sound-cue-reliant blind person you will benefit from many of these suggestions.
The Technology
Now we come to the very heart of Kendrick's book: a beginners guide to assistive technologies for those with hearing impairments. These technologies range from relatively inexpensive, plug-into-your-ear-and-play, seen-on-TV amplifiers, to cutting-edge hearing aids that cost thousands of dollars. She does an excellent job of explaining the different types of aids and how they work. She discusses the six primary manufacturers of digital hearing aids: Phonak, Signia, Widex, ReSound, Oticon, and Starkey, the only one of the big six located in the US. And who knew hearing aids came with a full catalog of accessories? Some of these include microphone devices you can set out on a conference table and that pipe the sound directly to your hearing aids; devices that do the same for TV or theater audio; and special cables that can connect the output jacks of other sound players directly into your hearing aids. She goes on to discuss her own journey through the years using increasingly advanced hearing devices. One thing I wish Kendrick had focused on is a more complete description of how this improving technology improved what she could hear. She mentions being able to hear her footsteps on the stairs and the swish of her long hair when she first ?uses a hearing aid. But I did not get the sense of exactly how her ability to participate in the world of sound has benefited from 20 years of technological advances.
One important arena where When Your Ears Can't Help You See shines is the lengthy discussion of specific issues faced by someone with a visual impairment when they seek out an audiologist to be fitted with hearing aids. These include occlusion, the feeling of your ear being plugged, creating an additional barrier between you and the world. Localization is the loss of the ability to pinpoint the direction from which a sound emanates. Imagine standing in the middle of a busy intersection with nothing but a pair of monaural headphones to guide you?
There's also the matter of echolocation, which most blind people use to one degree or another and which can be impossible if you have the wrong hearing aids. Also, these days hearing aid manufacturers are increasingly using mobile apps to enable the user to adjust the settings of their devices to suit their changing needs, such as a quiet night at home versus in the bleachers at a NASCAR event. Many of these app developers assume the user's only disability will be aural, leading to more than a few speech accessibility issues. Happily, Kendrick has discovered that many of these issues can be overcome with a bit of memorization and/or physical button alternatives.
Considering the author states, "My own most recent acquisition, for two Oticon OPN S Rite hearing aids, a Direct Audio Input cable, a ConnectClip remote mic, and a TV Adapter was about $7,500," it would be unreasonable for the reader to expect her to be hands-on familiar with more than a very few devices and accessories. Kendrick had to spend a lot of time educating her audiologist on the additional needs of the visually impaired. If you have both hearing and vision loss and are even considering consulting an audiologist, you will benefit greatly from reading about her experiences.
And speaking of high costs, sadly, only a very few insurance programs cover the full costs of professionally prescribed hearing aids. Kendrick does include sources of financial assistance, but let's face it: with the aging population there are going to be more and more people who require hearing access tech and can't afford the many thousands of dollars these devices can cost. Many of these seniors will turn to inexpensive mass-market devices, which can be analogous to using a pair of dime store reading glasses to help deal with profound astigmatism.
Recently, we have witnessed the emergence of a number of direct-to-consumer companies developing and marketing in-house versions of everything from high-tech mattresses to eyeglasses and selling them without so much as a storefront. A new healthcare startup called Audicus is attempting to do the same for hearing aids, offering high tech devices, testing, and support for considerably less than the usual prices.
One of the arguments against purchasing hearing aids online is that only a professional in a clinical setting can properly diagnose the cause of a hearing loss and detect any conditions that may lead to additional damage. This is true. It's likely also true for a visit to the eye doctor. But these are separate activities. After all, when is the last time you bought a pair of glasses from your ophthalmologist? And considering there may be millions of people who could benefit from a hearing device but who cannot afford them, should the choice really be between using nothing or a mass-produced, one-size-fits-all amplifier?
Recommendations
According to Kendrick the chances are good that eventually you will join the ranks of the hearing impaired. She backs this up with an AARP study that found 39 percent of those ages 60–69 have some hearing loss, and one in every two people over 75 are in the club. So if you think this book does not apply to your situation, think again.
Product Information
When Your Ears Can't Help You See, by Deborah Kendrick, is available from the National Braille Press in Braille, Daisy download, eBraille, Large Print, and MS Word formats for $18. Add $2.50 to purchase one of the digital formats preloaded onto a USB drive.
This article is made possible in part by generous funding from the James H. and Alice Teubert Charitable Trust, Huntington, West Virginia.
Related articles:
- Ramona Rice: Using Her Abilities to Help Others by Janet Ingber
- Book Review: Haben: The Deafblind Woman Who Conquered Harvard Law, by Haben Girma
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