Raymond J. Trybus:
The Role of Spirituality and Religion in Coping with Hearing Loss

The purpose of this project was to provide pilot-level information about the roles of spirituality and religion in the process of coping with hearing loss among four very different groups of persons with hearing loss. These four groups are:

(1) persons who are hard of hearing, with onset of the loss at various stages of life;

(2) persons who are profoundly and prelingually, and thus usually also culturally, Deaf;

(3) persons who became deaf in adolescence or adulthood ("late-deafened"), well after the development of spoken language and a "hearing" self-identity; and

(4) persons who have combined substantial hearing and vision losses, including persons who are deaf-blind.

This presentation will address some of the preliminary data obtained from focus group interviews. Later reports will provide additional quantitative data, and examine the relationships among the qualitative and quantitative data obtained.

From many spiritual and religious perspectives, the process of a person’s making contact with the transcendent or the divine depends in many ways on developing and maintaining loving/caring and compassionate relationships with other human beings. At the same time, the essence of hearing loss is that it impedes the ability of human beings to communicate with other fellow human beings, and thus it may also impede the ability to establish and maintain relationships with others, which depends on that interpersonal communication. Since both spirituality and hearing loss are thus intimately intertwined with the process of developing and maintaining human relationships, the bi-directional impact of these two realities on each other deserves exploration and understanding.

These issues were explored by means of a series of individual structured interviews and small focus group interviews with members of the four groups described above. These interviews were designed to elicit descriptions of the participants’ spiritual and religious practices, beliefs, and attitudes; the ways in which spirituality/religion and the experience of hearing loss have affected each other in their lives; and how they have accessed and/or wished they could access spiritual and religious activities and associations. In addition, participants completed the "National Institute on Aging/Fetzer Working Group Brief Measure of Religiousness and Spirituality" in written questionnaire form.

The relationship between hearing impairment and spirituality/religiousness was explored in both directions; i.e., the impact of spirituality on how people cope with or live with hearing loss, as well as the impact of hearing loss on one’s spiritual and religious status and involvement. The results of this pilot project are intended to guide initial understanding of these issues and of appropriate interventions, and to lead to more specific research hypotheses and proposals for further and more definitive research.

The essence of hearing loss is that it impedes the ability of human beings to converse in the ordinary, relatively effortless ways in which most people communicate with their fellow human beings (speaking of the "mechanical" aspects of communication rather than the deeper levels of conveying and receiving meanings and emotions). Unlike other disabilities, therefore, which impair or eliminate certain important functions such as mobility or even vision, hearing loss affects a function which goes directly to the heart of what it is to be human, and thus hearing loss often leads to isolation and social withdrawal. Helen Keller used to say that hearing loss was far worse than vision loss because, whereas vision loss separates a person from engaging with many aspects of the natural world, hearing loss separates a person from engaging with fellow human beings. The great composer Beethoven said, "Such experiences [resulting from having become deaf] have almost made me despair, and I was on the point of putting an end to my life - the only thing that held me back was my art." Thus, while at first glance hearing loss may seem to be much less consequential than other, more immediately life-threatening disabilities, in fact it has a pervasive effect on most, if not all, aspects of life, including spirituality and religious experience.

Although the term "hearing loss" can be used in a technically correct way to refer to any person who has any degree of impairment of hearing, there are in fact very large differences among person with hearing loss as a function of the level of the loss and the person’s age at onset of the loss.

The largest group of persons are those who are hard of hearing (this group is estimated at 20,000,000 to 22,000,000 persons). This means that the person depends on hearing for ordinary person-to-person communication, but hearing has been impaired in one or more of various ways, with a consequent reduction in the individual’s ability to hear and understand speech and other sounds, at least in some situations (e.g., against a noisy background). Hard of hearing persons often benefit from hearing aids and from other assistive listening devices. The majority of hard of hearing persons become so during adulthood, typically in a progressive fashion, but some individuals are hard of hearing from birth or very early in life.

Next in population size are those who are late-deafened (estimated at 800,000 to 1,500,000 persons). This means that the sense of hearing is essentially non-functional for purposes of speech communication (though some persons who are late-deafened may still be able to hear certain loud environmental sounds), and that the loss was acquired well after the acquisition of speech and language. These persons receive very little or no benefit from hearing aids or assistive listening devices, and depend entirely (or nearly so) on some sort of visual communication, including speechreading, sign communication (but usually not the full idiomatic American Sign Language), and the written or printed word. Some people with a progressive loss begin as persons who are hard of hearing, and later become late-deafened persons.

Much smaller in population size, though perhaps more familiar in the popular consciousness, are persons who are profoundly deaf, and who became so at birth or soon thereafter, before the establishment of speech and language (estimated at 300,000 to 500,000 persons). Because most such persons attend special schools, use American Sign Language (in the United States), and in other ways have deafness as part of their core self-identity, they are typically referred to as culturally Deaf (with the capital "D" serving to indicate the cultural rather than the audiological status of the person). For such individuals, deafness is commonly accompanied by a distinct sense of differentness from hearing persons, but there is ordinarily no sense of loss, as is usually the case with persons who have once had hearing and subsequently lost it, either gradually or precipitously.

Another special group, generally the smallest of these four (no good estimates available), consists of those persons who have a combination of being deaf or hard of hearing, together with a severe uncorrectable vision loss. In the extreme case, this includes persons who are both deaf and blind. Because the ordinary mode of compensating for deafness is through visual communication of some sort, dual sensory impairment, and especially deaf-blindness, can engender very substantial issues of communication deprivation. Because of the great variability in the sensory abilities of such persons, communication approaches must be individually tailored, and may depend heavily on tactile methods for those with the most severe impairments.

Rehabilitation services and methods designed for helping persons to live with hearing loss have traditionally focused primarily on the medical and audiological and, to a much lesser degree, on the psychological aspects of hearing loss. Unlike the case with many other disabilities, many persons with hearing loss never seek or receive any rehabilitation services, especially those who are hard of hearing with a progressive loss as they become older. Even rehabilitation agencies and professionals often downplay and minimize the pervasive consequences of hearing loss (except, usually, in the case of deaf-blindness or early onset profound deafness). For many others, "rehabilitation" may mean only a brief encounter with a physician or an audiologist for a hearing assessment, and a subsequent appointment with a hearing aid dealer to receive the prescribed aids. No assumption should be made, therefore, that the "living with hearing loss" phase follows a substantial "rehabilitation" period, as is often the case with other disabilities.

Methods: General

This project is proceeding in accordance with the philosophy of "Participatory Action Research (PAR)," in which the persons being studied function as active partners or participants in all phases of the design and conduct of the project, rather than being merely the objects of study. Accordingly, we have operated with the assistance of our colleagues in the "consumer" organizations, including Self-Help for Hard of Hearing People, Inc. (SHHH); the National Association of the Deaf (NAD); the Association of Late-Deafened Adults (ALDA); and the American Association of the Deaf-Blind (AADB).

Methods: Participants

Thus far, we have obtained the cooperation of 15 persons who are deaf-blind (recruited from attendees at the annual conference of the American Association of the Deaf-Blind -- AADB); 16 persons who are late-deafened (recruited from the San Diego chapter of the Association of Late-Deafened Adults -- ALDA); 10 persons who are hard of hearing (recruited from attendees at the annual conference of Self Help for Hard of Hearing People, Inc. -- SHHH); and 4 persons who are prelingually deaf and culturally Deaf (recruited via Deaf Community Services of San Diego, Inc. -- DCS). The project is continuing, with a goal of obtaining more participants, especially from the prelingually deaf and hard of hearing groups.

Methods: Data Collection Procedures

As indicated above, after receiving a general description of the project and signing the participation agreement form, all study participants then completed the "NIA/Fetzer Working Group Brief Measure of Religiousness and Spirituality" (BM-RS). Most participants completed this measure on their own in paper and pencil form; those persons unable to see the form well enough to read and respond to it had it read to them in an appropriate communication mode by a research assistant skilled in communication with deaf-blind persons. Upon completion of the BM-RS, the interview ensued. Interviews were conducted in focus-group format for the groups of persons who are hard of hearing, late-deafened, and prelingually deaf. For the participants who are deaf-blind, the interviews were conducted individually in an appropriate communication mode by a research assistant skilled in communication with deaf-blind persons.

Each of the group sessions required a different array of communication-assistive services and technologies. For the late-deafened group, CART (computer-assisted real-time captioning) service was used, along with an English-based version of sign language used by the interviewer. For the hard of hearing group, an infra-red assistive listening system was used, along with appropriate seating, lighting, and acoustic arrangements to enable the effective use of speechreading and personal hearing aids or cochlear implants; in addition, English-based signing was used to accommodate one member of the group. For the prelingually deaf group, the interviewer used Pidgin Sign English, and was assisted by two interpreters using American Sign Language (ASL). As indicated above, communication was individually tailored for the Deafblind participants. This varied from tactile signing for some, to use of precisely-located visual-field signing for those with a little residual vision and sign language skill, to precisely-located visual-field speechreading with hearing aid or cochlear implant amplification for others. The sessions which used sign language were also videotaped so that later checks could be made on the accuracy of interpretation of comments made in sign language. The session supported by CART service also resulted in an ASCII transcript on disk which was used for data analysis.

Participants each received a $25 honorarium in recognition of their participation in the study, and will be provided (later this fall) with a copy of the final report, if they so desired (most did).

Results: Interviews

Some of the results of the project are most powerfully understood by listening to the words of participants directly. As with many aspects of life, a major issue for persons with hearing loss is communications access, and the consequences of lack of communications access. Access problems are even more intense for persons who are deaf-blind, as they extend to transportation and other logistics. The sense of isolation and separation from a church community as a result of hearing loss, or combined hearing and vision loss, was stated by many participants:

...AND THEN, OF COURSE, WHEN I LOST MY HEARING (UNDERSTAND, I AM 73) THERE WAS NONE OF THIS ASSISTIVE LISTENING DEVICES, NOTHING. AND OF COURSE MY FORMAL CHURCH WENT DOWN THE DRAIN. (Late-Deafened)

I DON'T GO TO CHURCH. BUT I DON'T THINK GOD IS GOING TO FROWN ON ME TOO MUCH FOR NOT GOING BECAUSE I WOULD BE THERE JUST TAKING UP SPACE. (Late-Deafened)

I FELT THAT I WAS BEING SHUT OUT OF CHURCH. IT IS NOT JUST NOT UNDERSTANDING THE MINISTER ON SUNDAY. CHURCH LIFE IS A GOOD DEAL MORE THAN THAT. BUT PEOPLE IGNORED ME, TALKED AROUND ME, I COULD NOT TAKE PART IN DISCUSSIONS AND IF I ASKED A QUESTION THEY SAID WE WILL EXPLAIN IT LATER. AND IT WAS LIKE THEY WERE BARELY TOLERATING ME AND I GOT THE FEELING IF THEY DON'T CARE ABOUT ME, I GOT THE FEELING I DON'T CARE ABOUT THEM. SO AT THAT TIME THERE WAS A CLASH BETWEEN MY HEARING LOSS AND ACTIVITY IN CHURCH LIFE. (Late-Deafened)

I TOO HAVE A STRONG BELIEF THAT GOD CREATED THIS WONDERFUL WORLD AND SO MANY BEAUTIFUL THINGS, THERE ARE SO MANY THINGS TO BE GRATEFUL TO BE A PART OF. BUT FOR ORGANIZED RELIGION I HAVE LOST MY ENTHUSIASM. I HAVE COME UP AGAINST TOO MANY WALLS DURING MY DEAF YEARS. (Late-Deafened)

The difficult part of my deafblindness in relation to religion is simple logistics - I can no longer just jump in a car and drive over to church. I can no longer depend on my residual hearing to understand the sermon. (Deaf-Blind)

My deafblindness has led to obstacles in just accessing the message at church. I can’t read print any longer, and my hearing is mostly unreliable. That leaves me frustrated sometimes, and in a perfect world, I could access my church as easily as a hearing/sighted person. (Deaf-Blind)

At the same time, it was hard, and still is very difficult to get involved with Church on a regular basis because of my need for a one on one interpreter/guide. Transportation is also hard because there is no regular public transportation on Sunday to my church. I feel there is only so much my religion and church can offer me because of my needs as a Deafblind person. That has hurt me. (Deaf-Blind)

The negative part of my deafblindness is that many times people do not understand my needs, or refuse to meet my needs related to communication and vision. Most people do not understand what it is like to be Deafblind, and not be able to hear or see well. It creates many problems. The problems related to church involve finding interpreters, transportation, large print materials, and to have proper lighting to start. (Deaf-Blind)

And some similar stories were told with a definite sense of humor:

AFTER I GOT MY COCHLEAR IMPLANT AND GOT TO USING IT AND WENT [back] TO CHURCH, AFTER CHURCH ONE MORNING I TOLD MY PASTOR, I SAID I WANT YOU TO KNOW THAT'S THE BEST SERMON I HAVE HEARD IN OVER A YEAR AND A HALF. AND HE SAID, WELL, THANK YOU. I SAID, IN FACT, THAT'S THE ONLY SERMON I HAVE HEARD IN A YEAR AND A HALF! (Late-Deafened)

Sometimes issues of doctrine or church practice were experienced as having a negative personal impact, in light of the respondent’s disability status:

I have been around people who believe in a laying on of hands kind of healing. They tried it with me to "save" me from being Deafblind, and of course when I still had hearing and vision loss I ended up feeling very confused and depressed. Deep inside I had accepted my deafblindness, but I felt pushed to be "healed." It confused and harmed me. To be a good Christian I thought I needed to be healed, but because I had accepted my deafblindness, plus the fact that the healings had not worked - did it all mean that I wasn’t a good Christian after all? The whole experience with the healings left me sad, confused and with many questions regarding religion and spirituality.

Some respondents took the experience of isolation, exclusion, and denial or limitation of access as a challenge, and developed personal responses which had value as a means of coping for themselves, as well as perhaps having a broader impact on the community:

I RESPOND WELL TO A CHALLENGE AND CHURCH WAS A CHALLENGE FOR ME AS I LOST MY HEARING. SO MY MISSION HAS BEEN TO MAKE CHURCHES, NOT ONLY MY OWN BUT OTHER CHURCHES ACCESSIBLE TO PEOPLE WITH HEARING LOSS AND OTHER DISABILITIES. (Late-Deafened)

CHURCH PEOPLE AS A WHOLE DO NOT UNDERSTAND OUR PROBLEMS, OUR GRIEVING, WHATEVER. BUT THEN ON THE OTHER HAND THEY WILL NEVER KNOW UNLESS WE TELL THEM. SO IF WE ISOLATE OURSELVES FROM THEM, THEY NEVER LEARN AND IT NEVER IMPROVES. SO I FEEL THAT WE HAVE TO, IN EFFECT, FORCE OURSELVES BACK INTO THE CHURCH TO MAKE THEM AWARE OF THIS. I FEEL VERY STRONGLY CHURCHES NEED PEOPLE WITH DISABILITIES, HEARING AND OTHERWISE. THEY ARE NOT WHOLE WITHOUT US. (Late-Deafened)

I HAVE [heard of other experiences] AND IT'S MORE POSITIVE, ACTUALLY TREMENDOUSLY POSITIVE. AT THE FIRST BAPTIST CHURCH OF ______ WHICH I USUALLY GO TO, THERE IS A DEAF MINISTRY AND THERE IS ALWAYS TESTIMONIES OF PEOPLE, PEOPLE WHO HAVE LOST THEIR HEARING AND THEIR LIFE HAS COMPLETELY CHANGED AND THAT THEY GO ALMOST FULL TIME INTO THE MINISTRY . . . TO HELP DEAF AND HARD OF HEARING. THEY THEMSELVES EITHER BECOME A PASTOR, A DEACON OR WHATEVER IT IS. THEY FEEL GOD HAS LED THEM THROUGH THEIR CIRCUMSTANCES TO HELP THEM HELP PEOPLE WITH SIMILAR PROBLEMS... (Late-Deafened)

I can say that my spirituality has helped me acknowledge that there is a purpose for my being Deaf-blind. Maybe my higher power wanted me to be able to educate other people about deaf-blindness. Maybe my higher power wanted me to become a well-known leader or in a high position in the deaf-blind community. I believe that there is a purpose in life, even though we don't always know what it is. (Deaf-Blind)

Many respondents also describe a search for a church community that is welcoming, or at least manageable despite the problems of hearing loss, crossing previously uncrossed boundaries in the process.

WE STARTED ATTENDING A CHURCH IN OUR NEIGHBORHOOD, A DIFFERENT DENOMINATION, THAT HAS A VERY LITURGICAL WORSHIP SERVICE. MOST OF WHICH IS PRINTED IN THE BULLETIN OR READ OUT OF THE BIBLE. AND A SHORT, PROBABLY TEN-MINUTE HOMILY, [and] SOME MUSIC THAT YOU CAN FOLLOW IN A SONG BOOK IF YOUR HUSBAND IS STANDING THERE POINTING TO THE WORDS FOR YOU. I DEBATED A LONG TIME ABOUT CHANGING DENOMINATIONS. BUT AFTER I BECAME DEAF I REALIZED THAT HAD I BEEN IN THE CHURCH I GREW UP IN, I WOULD HAVE QUIT ATTENDING BECAUSE I WOULD HAVE RECEIVED NO . . . SPIRITUAL NOURISHMENT FROM IT. I WOULD HAVE SAT THERE FOR AN HOUR OR A LITTLE MORE AND HEARD AND PARTICIPATED IN NOTHING. BUT BECAUSE WE HAD MOVED TO A DIFFERENT DENOMINATION, I WAS ABLE TO FEEL AS IF I WAS PARTICIPATING AND ACTUALLY WORSHIPING. (Late-Deafened)

I WENT TO A CHURCH THAT WASN'T MY RELIGION, THAT HAD CAPTIONS, [but] THEY ONLY HAD IT FOR A SHORT TIME. IT WAS ONE OF THE MOST WONDERFUL SUNDAYS I EVER HAD BECAUSE EVERYTHING, THE SONGS AND THE SERMON, WAS IN CAPTION, AND I TOLD THEM I WOULD KEEP COMING BACK HERE, BUT THEY DIDN'T KEEP IT UP. (Late-Deafened)

There were also reminders that disability status is not the only consideration in how one addresses issues of religion and spirituality in life:

I started to go to a Deaf church, but felt it wasn’t stimulating enough - too basic in the message. My kids and family did not like the Deaf church so I slowly just quit going. Now, I’m sad that my kids do not have a strong religious base. I did try to go back to the hearing church, but because of the decrease in my hearing, I was only able to understand about 1/4 of what was going on. I was not assertive about my needs, and didn’t know many deaf people. (Deaf-Blind)

I want to emphasize that one of the reasons I don’t attend church regularly is because of problems with my son. It is one thing being Deafblind, and all the support services necessary for me to access church, but it is another thing to receive help for family problems, including my son’s behavior. (Deaf-Blind)

And some responses were more reflective and philosophical, and address what might be thought of as spirituality more than as religiousness, in the sense of belonging to a church community:

AS I GROW OLDER AND MY HEARING PROBLEMS INCREASE, I TURN INWARD FOR, I GUESS, WISDOM [and] INSPIRATION. (Late-Deafened)

THERE IS A PART [of hearing loss] THAT IS A BIG LET DOWN. IF YOU ENJOY MUSIC AND YOU WOULD NOT BE ABLE TO HEAR IT IN ITS GRANDNESS, THAT CAN KILL THE SPIRIT BECAUSE I THINK MUSIC AND SPIRITUALITY SORT OF GO ALONG TOGETHER. BUT THERE HAS GOT TO BE WAYS OF GETTING AROUND THAT, I THINK. GIVE ENCOURAGEMENT TO PEOPLE, BUT NOT FALSE HOPE. I DON'T BELIEVE IN GIVING FALSE HOPE. JUST KEEP THE FAITH. (Late-Deafened)

I HEARD RECENTLY THAT A DEFINITION OF MENTAL HEALTH WAS FEELING CONNECTED . . . TO THE WORLD AROUND YOU. . . . WE INTERVIEW PEOPLE AND [ask] . . . WHAT IS THE WORST THING ABOUT DEAFNESS, AND THE ANSWER ACROSS THE BOARD FOR ALMOST EVERYBODY IS ISOLATION, FEELING LEFT OUT. AND YOU CAN'T REALLY BE SPIRITUAL BEING ISOLATED, YOU CAN'T HAVE MENTAL HEALTH FEELING DISCONNECTED. AND SO MY ADVICE WOULD BE -- THE TENDENCY IS TO WITHDRAW A LITTLE BIT, THE TENDENCY IS TO GIVE UP SOMETIMES . . . YOU HAVE TO GO IN THERE AND STAY CONNECTED. NOT ONLY FOR YOURSELF, BUT FOR YOUR FAMILY, AND THE PEOPLE THAT PERHAPS YOU ARE A ROLE MODEL FOR. I THINK . . . ALDA IS ONE GROUP THAT HELPS PEOPLE FEEL CONNECTED. FEEL CONNECTED, STAY CONNECTED. DO WHATEVER YOU HAVE TO DO TO BE CONNECTED. (Late-Deafened)

I have experienced spirituality in nature and now that my hearing and vision are deteriorating, it is more difficult to access nature. I feel like time is running out for me in some ways because of my deafblindness and how I have practiced my own brand of spirituality in the past. (Deaf-Blind)

Once I understood my own deafblindness, and what I needed to cope, I felt more positive about life. It is very inspirational for me to be here at AADB and share with others. It is a reciprocal and a spiritual experience - communing with others like myself. I would not have this opportunity if not for my deafblindness. (Deaf-Blind)

I think being Deafblind, in the beginning, I was scared, and didn’t immediately call on God for help. Now that I’m Deafblind, I realize that god is blind like me. He does not see color in people and that is good. I used to [see color in people] as a sighted person and that was negative. (Deaf-Blind)

I had been very stubborn. I was deaf physically, but blind emotionally and mentally. Now I am Deafblind physically and I am hearing-sighted emotionally and mentally. It has been rough because I was always stubborn in many ways. Yes, I have been rebellious especially about things related to my blindness. My wife warned me about using my white cane, until I realized that I was putting myself and others in dangerous situations by not using it. (Deaf-Blind)

Formal religion has not helped a lot. I felt a strong negative impact from the teachings of the Catholic church in dealing with my deafblindness. The Catholic church says that, in general, people that have a disability should offer up their suffering to God, and ask God for help. In contrast, the Indian spirituality has a more positive perception of disabilities and they believe that people who have disabilities are special people, with special talents and things to offer through their disabilities. (Deaf-Blind)

Because of my own deafblindness I think I have been able to look at each person as an individual - unique. It helps put everything in a better perspective for me. We are all equal, no one is better than another. (Deaf-Blind)

I think my church itself, didn’t know what to do with me, or how to offer support services for me. Thank goodness I am a unique person, so I had my own personal relationship with God. Without that, I think it would have been hard and negative to just rely on my church to help me through the pain of deafblindness. My church was not a big help in dealing with deafblindness.

Sometimes, I get frustrated and bitter. I do miss my visions. I did

scold God and asked Him why I am blind. I hate that I have to depend on people to drive me and interpret for me, so I end up asking God why he has burdened my loved ones. I felt so independent when I was younger and I could see. Now, I sometimes feel dependent and I hate asking others to interpret for me, even at church.

7. When Fr. Tom Coughlin came to Pittsburgh in mid-1979's, I first met him.

I did tell him about my visual problem but I also showed him my smile. That

stole his heart. . He later told me that he never saw a Deafblind person so positive

like I was. I had no ideas what he meant by that. That is what I try to teach other people in my same position being Deafblind - to carry your positive attitude with you. I also tell other people how I feel about God, and encourage them to share their spiritual beliefs with me. We both can learn from each other My other advice is to give people praise for their positive energy and it will continue to flow onto others