The Late Deafened Spiritual Connection I - IV

ALDA NEWS - magazine of the US based Association of Late-Deafened Adults, ALDA, - now has a regular column on spirituality. Author is Nancy Kingsley of New Jersey, herself being late-deafened. ALDA and Nancy Kingsley have kindly accepted to share this column with CHURCHEAR.

You can contact the author by email. Click here.

The Late Deafened Spiritual Connection # I

By Nancy Kingsley

Does this look familiar:

You're an active member of a congregation, and your involvement is important to you. Then you lose your hearing, gradually or suddenly. Your spiritual connection, along with many other cherished aspects of your life, is disrupted by the resulting communication barrier. As you struggle to cope and adjust, God may seem absent, too. How do you feel ? What do you do?

Becoming deafened affects our lives in numerous ways, including our self -image, our relationships with friends and family, and our work. The inability to hear often separates us from many cherished activities, including our spiritual connection. We may become "angry at God" as a result of our problems but have no supportive spiritual community to help us deal with our difficulties and questions. Perhaps we've even been blamed in some fashion for our hearing loss or been told that our lack of sufficient faith is the reason we haven't been healed of it.

This column is dedicated to issues related to late-deafness and spirituality, from practical concerns (such as communication access problems) to questions and insights resulting from the experience of being deafened. All faiths are welcome to share in the discussion. "The Late-Deafened Spiritual Connection" will become a regular feature of the ALDA News if there is sufficient interest, so let's hear from you!

My interest in this subject had its origins in the experiences of my early years. I've had a progressive hearing loss since childhood, which eventually resulted in profound deafness. My excellent lipreading skills , along with my residual hearing, made it possible for me to attend lectures and participate in small groups until my loss became profound. With good acoustics, I could understand a sermon and follow along with the songs and responsive readings. However, even during those "functional" years, I encountered many frustrating situations. I found that I could participate effectively in some programs but not others, depending on the quality of the auditory setup; some speakers and some rooms were impossibly difficult. Unfortunately, I couldn't always tell in advance what would work out, so I sometimes had to withdraw from a program I had eagerly looked forward to because I couldn't understand what was being said.

I've always had spiritual interests, and I've read about and studied various Eastern and Western traditions and well as participated in a number of Protestant, Catholic, and Jewish programs (my family of origin is Jewish). My hearing loss made me aware, at an early age, of the questions people ask about suffering. Although (at that time) I felt flawed, I didn't believe I had been singled out for some kind of punishment, so I never asked, "Why me?" But I wondered about the reasons for suffering in general, and I read several books that attempt to answer this question (one of the best known is Harold Kushner's When Bad Things Happen to Good People). The books discussed a variety of solutions, including a loving but limited God, a God who suffers with us , a God who participates with us in the creation process, and other approaches. None of the answers completely satisfied me, though.

In addition to trying to find an adequate theological explanation of suffering, I struggled to deal with my own personal experiences. I was disturbed by people's apparent insensitivity toward my communication needs--especially when this happened in spiritual settings. I believed that religious communities ought to be more caring than the rest of society, and I thought--somewhat unrealistically--that they should be intuitively aware of what to do to help me without my needing to explain . When they didn't respond as I desired, I felt rejected and (at that point) unwilling to advocate for what I needed.

As my hearing loss progressed, it became more and more difficult to participate in group activities, and eventually I was forced to withdraw from nearly all of them. Figuring that my options in the hearing world were limited, I decided to learn sign language about 15 years ago with the intention of joining the Deaf community (this was before ALDA existed). I attended American Sign Language (ASL) classes at an interpreter training program but was unable to develop sufficient receptive skills to understand ASL well or use interpreters effectively. Fortunately for me, ALDA was founded soon afterwards, and I found a "home."

But I no longer had access to the kinds of spiritual connections that had been able to participate in when my hearing was better. Although I went to some religious programs for Deaf people, they were few in number and their focus was much narrower than the ones I had previously attended. My only remaining local involvement was a small Bible study, where I was able to follow the gist of the program because it was based on questions from a study guide and I sat across from the leader in order to read her lips (I still received some lipreading benefit from a hearing aid, but it was rapidly diminishing). However, I missed much of what other participants said, which I found extremely frustrating. After struggling along for some time, I finally arranged for one of the members to mouth certain parts for me in the fashion of an oral interpreter. While I wasn't able to understand everything this way, I felt more included than before.

Then in the summer of 1997, I was appointed to the ALDA Board to replace a member who had resigned, and I was required to sign up with America Online in order to be able to participate in online board meetings. Hoping to reconnect to some sources of spiritual fellowship, I searched the Member Directory for clergy and initiated a number of conversations via Instant Messages, the AOL equivalent of a TTY (text telephone). I found it exhilarating to be able to converse effortlessly online after so much frustration with and eventual withdrawal from most activities in the local community. The relationships that developed as a result of this barrier-free form of communication enabled me to grow more spiritually in the past year than in any comparable period and ultimately led to my decision to be baptized. The ceremony was performed in June 1998, two days before I received a cochlear implant, and was typed over the computer to my online spiritual community.

Yet, as rewarding as online contacts can be, they aren't substitutes for participation in the worship and activities of a local congregation. And here is where the communication-access problem continued to loom large. Late-deafened people face major barriers to participation, not only in their current or previous congregation (if any), but also in any prospective future ones. If you're searching for a spiritual home, how can you even find out where you would like to belong without being able to comprehend the services and other events?

I've experienced this problem firsthand. I needed CART (captioning by court reporters) in order to understand what was said in groups, but I wasn't comfortable with the idea of requesting this service on a trial basis from an unfamiliar congregation in order to decide whether I might like to belong, or on a regular basis if I wanted to continue attending. And while CART could make worship services accessible, how would I be able to participate effectively in other congregational activities?

I noticed that religious bodies, like society at large, were becoming conscious of the needs of the culturally Deaf community, and as a result , more houses of worship were providing interpreted services. Unfortunately, it was often mistakenly assumed that all people with hearing loss understand sign language (although the reality is that most don't). I felt left out, since no local congregations provided CART, and I began to think about how to make such groups aware of the need to offer spiritual access for late-deafened people.

I also learned that my feelings and experiences weren't unusual. At San Francisco's ALDAcon 1996, I attended a workshop given by Jan Gronborg Eriksen, a Danish minister pastoring people who are hard of hearing and late-deafened. He spoke movingly about the spiritual isolation they experienced, and his presentation nearly brought me to tears. In addition, the California School of Professional Psychology (CSPP) began been studying the role of spirituality and religion in coping with hearing loss and conducted individual and focus group interviews with people who were hard of hearing, late-deafened, culturally (prelingually ) Deaf, and deaf-blind. A number of late-deafened participants poignantly expressed their sense of exclusion and rejection by the spiritual community in comments like these:

"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."

"I felt that I was being shut out of church. 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..."

"...For organized religion I have lost my enthusiasm. I have come up against too many walls during my deaf years."

"After I got my cochlear implant...and went [back] to church, after church one morning I told my pastor,...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, it's the only sermon I've heard in a year and a half!' "

"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."

Other late-deafened people outside the CSPP study have described similar difficulties. Elinore Bullock, a late-deafened New Jersey ALDAn, recounts her experiences:

"I've never been the assertive type, especially when it comes to asking for help in regard to my deafness. I was fourteen when I lost my hearing . No assistive listening devices would have worked for me, and I didn't sign well enough to follow an interpreter for long. When I first attended my church, I chose a front pew and tried to lipread. I don't think I even revealed my deafness until I was asked to tell a little about myself when I became a member several months later. A church member called the pastor's attention to the fact that I seemed to be having a hard time following the sermon. This member, bless his heart, suggested that the pastor make me a copy.

"The choir often sings selections from the hymn book. With the cochlear implant that I received a few years ago, I can hear the music, the melody, and the voices, but I can't make out the words. It's pleasurable , even so. Before the implant, it was total silence during music times, and I simply pursued my own thoughts (like 'What'll I fix for lunch?').

"During non-worship functions such as dinners and outings, I had no help for my needs. With the implant, I'm able to function much better. I now use an FM-type listening system, and I no longer need a written sermon! Also, in committee meetings, I benefit from a little auxiliary mike that attaches to my speech processor. I could never function in these meetings before and avoided joining them."

Do you recognize yourself here? How has your understanding of community been affected by your awareness that hearing people don't intuitively know what your life is like, or what you need, either practically or spiritually? And may not always be spiritually generous? Is there a gift to your own spiritual life in this struggle? What restores a sense of God's presence? Do you feel "different" from hearing people? Is this OK? How can you share your experience of God through this struggle, with those who have never experienced a disability?

The next column will focus on the ways being deafened has influenced our spiritual development. Please share your story (l will withhold your name if requested). Also, let me know about other topics you'd like to see discussed in future issues. You can contact me by email, 201-768-2552 TTY, or 201-767-5460 fax. I'm looking forward to hearing from you!

(Article originally printed in ALDA News, Fall 1998)
You can contact the author by email. Click here.

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The Late Deafened Spiritual Connection # II

By Nancy Kingsley

(Reprinted from the ALDA News, Winter 1999)

Choices

I came across a delightful little story called "Excuses" in Tales of a Magic Monastery by Theophane the Monk:

"Why not?" that was the first thing he said. He had never seen me before. I   hadn't said a word. "Why not?" I knew he had me.

I brought up excuses: "My wife...the people I have to work with...not enough  time...I guess it's my temperament..."

There was a sword hanging on the wall. He took it and gave it to me. "Here, with    this sword, you can cut through any barriers." I took it and slipped away without   saying a word.

Back in my room in the guesthouse I sat down and kept looking at that sword. I    knew that what he said was true.

But the next day I returned his sword. How can I live without my excuses?

Stories like this help me to remember that, whatever the turn of events brings, I always have choices regarding my perspective and my response. And I need the reminder, because communication barriers sometimes seem insurmountable. It can be especially disheartening to encounter such obstacles in religious settings, which theoretically welcome everyone and serve as sources of aid and comfort.

I can identify with the frustration of the late-deafened woman who began attending a church with a signing ministry. Because she didn't know sign language, she asked for a notetaker. Unfortunately, the hearing people running the ministry were reluctant to provide this assistance, so a church member tried mouthing the spoken words instead. However, this was ineffective because the deafened woman wasn't a good lipreader. Since nobody was willing to appropriately accommodate her needs, she stopped trying to attend church.

In her presentation at the September 1998 Berlin conference of IVSS (International Federation for Pastoral Care to Hearing Impaired Persons), Kathe Rathke described the sense of futility that can develop when a person is unable to get his communication needs addressed despite repeated efforts: "If he comes across avoidable limits again and again, his self-confidence dwindles away...and he reverts to long forgotten behaviour patterns like denying, hiding and camouflaging his handicap to the outside, while his soul languishes pitifully in the inside."

What role can a person's spiritual outlook play in sustaining a sense of meaning and purpose when the usual support systems are lacking? Viktor Frankl grappled with the need to find hope in seemingly hopeless situations during his incarceration in a Nazi concentration camp; he tells his story in a best-selling book, Man's Search for Meaning. Frankl, a psychiatrist, was impressed by Nietzsche's statement that "he who has a why to live can bear with almost any how." Much of what Frankl learned from his camp experiences is relevant to issues associated with the losses and limitations resulting from other causes, including deafness.

Frankl writes that in spite of the primitive nature of concentration camps, "it was possible for spiritual life to deepen," and he notes that prisoners with a well-developed inner life were able to survive camp life better than those who were physically stronger but without such resources. Most prisoners suffered from an inferiority complex because they had once been "somebody" but were now treated like complete nonentities, but those who realized that their inner value was based on "higher, more spiritual things" understood that their worth could not be diminished by the circumstances of camp life.

The one freedom that the prisoners retained in the camps was the ability to choose their attitude: "Every day, every hour, offered the opportunity to make a decision, a decision which determined whether you would or would not submit to those powers which threatened to rob you of your very self, your inner freedom; which determined whether or not you would become the plaything of circumstance..."   Thus, "the sort of person the prisoner became was the result of an inner decision, and not the result of any camp influences alone." Frankl believes that meaning can be found no matter what a person's circumstances are, and that everyone is free to choose how to respond to the challenges of life.

What Frankl learned about a person's freedom to choose his or her response to difficulties helped Robin Titterington, a past president of ALDA, to find an accessible congregation and to become an active member despite the physical and attitudinal barriers that she faced:

"Worshipping is an integral part of my life but finding a spiritual home that was accessible to me was no easy feat. To make matters more difficult, I am an Episcopalian, which is rare in the deep South! It has been a long (and continuing) struggle to educate my church family that I want to be treated as an equal member, not someone to be 'taken care of.' I have requested interpreters and go to many church functions in addition to weekly services and the holy days. Finding interpreters continues to be a challenge. I have 'raised up' several students, only to watch them leave and become professionals.

"I have had to seek out opportunities to serve, rather than being 'chased down' as some of my friends say they are! I am a member of the Lay Pastoral Committee and I send birthday cards to all our senior members; this requires no communication. I have begun the process to be installed as a Daughter of the King, a religious order. This excites me, because I can be active throughout the diocese, not just in my church. I also meet privately with my priest on a regular basis and continue to educate him about my needs. Fortunately, he is caring and open to whatever makes me comfortable.

"I am now invited to take up roles in the service. Last year I was asked to be in the processional for the annual 'Kirkin' o the Tartans' (and I'm not even Scottish!). I have also contributed to our Lenten devotional. Sometimes it seems that God has given me some extra challenges to overcome in order to be able to worship. But He has also sent many angels to help along the way!"

When I read success stories like Robin's, I sometimes used to feel inadequate in comparison!  But I'm learning that everyone is a unique combination of experiences, abilities, and limitations, and what works for one person doesn't necessarily suit another. I can (and do) draw inspiration from the stories of people who have overcome various difficulties, but I know I have to find my OWN path, which may be very different from the one taken by somebody else.

We all have a story to tell, and everyone's is unique. Where are you now on the journey? Are you struggling to find answers and/or support, or have you been able to make meaningful connections despite the limitations imposed by deafness? What opportunities may be inviting you to venture into new territory? Please share your thoughts and concerns about late-deafened spiritual issues!  Contact me by email, 201-768-2552 TTY, or
201-767-5460 fax.

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The Late Deafened Spiritual Connection # III

By Nancy Kingsley

(Reprinted from the ALDA News, Spring 1999)

Breaking Down Barriers

Finding ways to break through the spiritual communication barrier requires the joint efforts of everyone involved--clergy, laity, and ourselves as late-deafened adults. There is room for lots of improvement on all these fronts!

I often get the feeling that late-deafness is politically incorrect, both inside and outside the religious environment. Disability ministries usually aren't concerned with issues of communication access, while ministries geared toward the culturally Deaf community generally don't meet the needs of late-deafened and hard of hearing people who want to participate in the hearing world and don't know sign language. Leaders of disability and Deaf ministries may show little interest in rectifying this omission even when their assistance is sought. (A pastor friend told me that a minister working with the signing Deaf recently said of late-deafened people, "They're not Deaf--they just can't hear!" There was no kindness in his voice.)

I've been trying to figure out why the problems of nonsigning people with hearing loss seem so unimportant to those who are reaching out to others with special needs.

Is it because late-deafened and hard of hearing people can disappear so easily in a crowd, their polite smiles masking the anguish of uncomprehension? Or because they frequently disappear altogether, isolation being the price they feel they must pay in order to avoid an unsuccessful struggle to fit in?

Or is it because they're often ashamed of their hearing loss (which society associates with becoming old and useless) and thus don't speak up to request assistance?

Or perhaps it's because hearing people usually have little understanding of the difficulties resulting from a hearing loss, because they constantly forget to make the necessary accommodations, or because they may resent making them in the first place?

I've found it particularly frustrating to encounter words implying that my needs are being provided for when they're not--terms like "inclusive" or "deaf and hard of hearing" when CART (realtime captioning) and assistive listening devices aren't offered. I don't feel included when I attend a program about religious access issues where an uncaptioned disability-ministry video is shown. (Religious videos in general are rarely captioned; as a result, I can watch the latest R-rated, violence-drenched Hollywood productions, but little that's spiritually uplifting.)

A disability ministry's failure to provide appropriate communication access at its gatherings is similar to scheduling these events up a flight of stairs, yet people rarely seem to realize this. I continue to receive invitations to attend programs of a ministry that previously informed me that it doesn't have the resources to provide CART. I feel invited and disinvited at the same time; I wonder if I'm expected to leave my hearing loss at home for the evening and come along and have a good time?

Houses of worship aren't covered by the Americans with Disabilities Act, but they are covered by the moral obligation to welcome everyone who wants to participate. And a welcome includes more than the mere issuance of an invitation; the guest must be made to feel at home.

Sally Wilson, an ALDAn from New York, says, "The big problem with hearing loss is its invisibility. Hearing people who work willingly to remove barriers for wheelchairs (and include in the worship services the childlike adults who live in the group homes in my area) cannot see the barrier that surrounds people who are hard of hearing." Lips hidden by a microphone; lights turned down; a noisy background; conversation flowing swiftly between several people; questions from members of the audience--these kinds of situations tend not to be recognized as potential barriers. There is little awareness of the need to provide captioning and other visual input for late-deafened people.

Arranging for appropriate access may require much creativity and persistence, and it can be tempting to walk away from the challenge. But withdrawing also has a price. In Dr. Raymond Trybus' "The Role of Spirituality and Religion in Coping with Hearing Loss," a late-deafened person comments, "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."

We need to find ways to make the connections.  A pastor commented that many congregations are small and have very limited funds, requiring them to prioritize their spending, but that "people respond immediately and with great generosity to human distress they can experience." Clergy and others can be taught how to accommodate us. Perhaps some congregants can serve as bridge persons, assisting with communication access when necessary.

But will we ask for and accept the help we require? There is a strong tradition of bluffing and withdrawal among hard of hearing and late-deafened persons. Can we see ourselves as persons worthy of being included? Are we willing we speak up again and again if our needs aren't being adequately met? A Catholic priest told me that nobody ever asked him to install an assistive listening system in his church and that he would have done so if anyone had. He found it frustrating that some of his hard of hearing parishioners insisted on sitting in the rear pews where they had always sat, although he knew they couldn't understand what was being said from that distance anymore.

Concerned about appearing "different," people with hearing loss are often reluctant to use communication assistance even when it's available; others passively accept deprivation as inevitable or give up after a few unsuccessful efforts to improve a situation. Many are afraid of bothering anyone with requests for help, become discouraged when others fail to accommodate their needs, and suffer from low self-esteem because of their loss.

I once told my mother that I felt like a beautiful dress with a big spot on it, and I recall arguing on another occasion that the slogan "God Doesn't Make Junk" wasn't true because He made me. But I don't see myself as "damaged goods" anymore, because many subsequent experiences--particularly participation in ALDA and other hearing-loss advocacy groups--have shown me that I'm a valuable human being despite my deafness. I've also discovered that people vary in their ability to respond to my needs and that even members of the clergy are not always understanding. I'm learning not to take negative experiences personally, not to expect perfection, and not to give up when I don't get immediate results.

Gaining admission requires a willingness to continue to ask, seek, and knock until the door is opened. In his "Letter from Birmingham Jail," Martin Luther King observes, "Human progress never rolls in on wheels of inevitability; it comes through the tireless efforts of men willing to be co-workers with God, and without this hard work, time itself becomes an ally of the forces of social stagnation. We must use time creatively, in the knowledge that the time is always ripe to do right." Are we ready to follow through?

Please share your thoughts and concerns about these and other late-deafened spiritual issues! Contact me at by email, or 201-768-2552 TTY, or 201-767-5460 fax.

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THE LATE-DEAFENED SPIRITUAL CONNECTION:

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