by Agnes Allen
From the Editor: In the April 2013 issue we published an article entitled “Blindness and the Value of Life,” in which we discussed the decision of two deaf-blind men to end their lives. Since that time we have received several letters and articles affirming the value of life as people who are deaf-blind. Here is the one we chose to print. The author, Agnes Allen, will be familiar; she had an article in the June issue. Here is what she says:
I ask you to look up at the moon and the stars—how shining and bright they are. I ask you to listen to a Beethoven symphony—how majestic and grand it sounds. Taste a sweet, juicy orange—how succulent. Come smell a lovely blossoming rose—how fragrant. Pet a soft, furry kitten—how silken. Can you imagine for a moment what it is like to be bereft of any of our five remarkable senses? I would like to share with you some of the ways in which I have personally experienced the loss of two of the sentient gifts bestowed upon mankind: total vision loss and partial but moderate to severe hearing loss.
Most people take sight and hearing for granted, and to be without one or both of them seems unthinkable. I have been totally blind since early childhood and have lived with a major hearing deficiency for much of my adult life. Since I lost my sight very young, my adjustment to my predicament was a relatively simple matter. Training and education made it possible to live normally and actively in my world. But developing a hearing impairment along with blindness as an adult was devastating. I was neither psychologically nor emotionally ready to cope with this double whammy, nor could I have foreseen adapting to it in the future. I could not make eye contact with someone, nor would I be comfortable in communicating freely with others.
Yes, wearing hearing aids to a degree enhanced the hearing I had left, but that is just what they are: hearing aids. I find them to be of very little help in certain situations. If a person speaking to me turns his or her head even slightly so as not to face me directly, the spoken words become unintelligible. I cannot understand what the person sitting across the table is saying if any other noise is occurring simultaneously, for example in a restaurant, where talking and clattering music create background noise. At a social gathering or a meeting, when a joke or funny remark is being passed along, I cannot join in the ensuing laughter; I sit in silence and let the whole episode pass me by.
The pastor of my church has kindly installed an audio system especially designed to improve the auditory quality of the mass or other services. When the system is working efficiently, I can clearly hear the homily and other parts of the mass.
Prior to the traumatic change in my life engendered by the hearing loss, I was a successful student, productive employee, and dedicated mother of three girls. But with the onset of my hearing difficulty I was compelled to meet new challenges. One of the most important of these was to search for employment in which sight and hearing were not absolutely crucial. The skills of Braille literacy had become second nature, and a friend who was a professional Braille proofreader suggested that I try to find employment as a proofreader for a nonprofit agency for the blind in Philadelphia. I followed up on my friend's suggestion and arranged an interview with the head of the department. After serving in the field of Braille proofreading, I found employment as a tutor of two blind students in the Vineland, New Jersey, public schools.
From time to time I am invited to speak to various groups about blindness and Braille. Often, if the audiences wish to follow up with questions or comments, I am besieged by the nagging fear that I will be unable to hear or understand. To alleviate this anxiety somewhat, I like to ask someone in the front to repeat what was said when I cannot hear the original speaker clearly.
I am certain it would be less stressful to remain at home and avoid such situations, but how could I live as a recluse and remain happy? I would become less a person for doing so. It is very easy to isolate oneself and begin to question, "Why me, Lord?" and feel inferior to those around me who can see and hear. At such times I must take stock of my own talents and capabilities, focusing on what I can do, not what I can't do.
A sense of humor lightens the pain of most hardships. It softens the vicissitudes imposed by the condition. This is no less true of deaf-blindness. For example, Bill, a hearing-impaired man said to his friend, "Joe, I just received a new hearing aid, and it is simply wonderful!"
Joe replies, "Oh, yeah, what kind is it?" Bill responds, "2:30." Then there was John, who said to his wife, "Susie, go do the bills." Susie retorts, "Did you say, `Go take a pill?’" In the foregoing witticisms unintelligible speech is the culprit.
Hearing technology seems to be keeping moderate pace with general technology. I have benefitted exceedingly from digital hearing aids, comparatively speaking. Without them the hearing world shuts down. My digitals contain a built-in switch which, when activated, allows my hearing to adjust to different environments. When the switch is on program one, it sets the tone for normal conversation. When on program two, it reduces background noise. This mechanism homes in on the targeted voice. When I am riding in an automobile or a bus, my digitals can be set to diminish the roar of outside traffic, making it easier to converse with the driver.
Once I attended a wedding reception at which the surroundings were so fraught with noise that I could scarcely hear what was being said by the woman sitting next to me. I could hardly await the return to my peace and quiet at home. If an interesting topic is introduced at a meeting or social gathering, it is difficult for me to follow the discussion, no matter how much I would like to contribute. In such a situation I feel isolated and excluded. If I ask a question or make a comment, I do not know whether what I say has any relevance. My tendency is to remain quiet in order to stave off embarrassment. The acoustics of a room can affect the quality of hearing. An entire lecture or discourse can be lost or muffled. A sighted and hearing person may be able to salvage some of the information by watching the speaker's gestures and other visual clues, but not me.
When speaking to someone by telephone or face to face and I miss a word or sentence, I may ask the person to say it again or question, “What's that?” My companion may patiently repeat the missed word or phrase the first time, but on the second or third try I sense mounting frustration for both the other person and me. When I am on the telephone and listening for an important number, I can write down a wrong number because a nine and a five, for instance, contain the "i" vowel and are easy to confuse. Consonants are not always clear.
When one learns that someone has a hearing difficulty, the tendency of the person communicating is to raise the voice when all that is needed may be a clear, modulated voice and clearly enunciated consonants, because loudness can distort the sound. High frequencies in some women's higher pitched voices can play havoc with communication.
Although the human ear has never been replicated, the miracles of technology are phenomenal. Hearing technology has really made great strides over the past decades. Gone are the days of old-fashioned hearing contraptions, which little improved the hearing of the affected individual. As sophisticated and revolutionary as modern hearing technology has become, it has yet to transform the original and natural hearing function of the human ear. Nor do I ever expect it to do that. Of course no one can predict the future. Who can tell what miracles may be produced for people with hearing loss? I look forward to a time when it will no longer be necessary for me to ask, "What's that?" or "Say it again?" or "Beg pardon?" How spectacular that day will be!