Jan Grønborg Eriksen:
The Homeless (Late Deafness)

(translated from German by Kirsten Kjær Ohms)

I have tried not to prepare too long a presentation. We need to discuss what we in the Churches do with the late deafened adults (LD). I hope that we can discuss the theme informally during this conference - in pauses e.g.

Tonight our theme is: late deafened adults (LD). They grew up hearing, but later lost so much hearing that they - even under optimal conditions - cannot understand normal speech. They need visual communication. Reasons of their severe hearing loss are various: Meningitis, other diseases, tumors at the hearing nerves, - it may be an inherited disposition - and many cases are without an obvious explanation. They just cannot hear any more.

Many think of LD as just deaf. Don’t do that. When it comes to language and culture - identity! - LD belong to the hearing world. They just don’t hear. And most of them don’t understand signing.

A small group? Yes and no. How many they are has been the subject of a recent Norwegian survey. Norway has approximately 2.000 LD in the age between 18 and 65 years. That is in a country of 5 million inhabitants.

The Norwegian survey probably means, that in e.g. Germany with 80 mill. inhabitants, the number of LD between 18 and 65 years old is likely to be 32.000.

However, the Norwegian survey also proved that Norway has between 3 and 4.000 LD who are older than 65. Late deafness is - as hearing problems in general - especially though not exclusively a risk for elderly people.

The Norwegian figures probably means that besides her 32.000 younger LD Germany has 48-64.000 elderly LD! All together there are as many LD as Deaf persons.

Not many know this fact. And since the number of LD, severely disabled persons, is so large, it is actually surprising that most ordinary people have never heard of LD.

Why is that so? Do the LD hide?

You might say they do. Especially the elderly LD give up easily. They do not try to cry out loud about their rights or their problems - like nowadays most disability groups do. When you feel old and even cannot hear any more, your self esteem gets very low. You give up - your active life is over. That is how many end up.

The younger LD fight - they must fight, if they wish to live on. It is not spoken of very much, but it is a fact that there are quite many suicides among the LD. They may get all kinds of technological devices to help them - it does not help them much. Even the LD who know signed assisted language can only cope on the job market if they have an interpreter.

Their social life is a struggle. Often they do not have any.

And yet this group of disabled persons does not stand up often. They do not cry for help. They seem to hide.

Friday last week, Ray Trybus and I met a representative of a large new Danish project for LD. The man told us about some very fine education programs offered to LD and their families. But the project staff have one problem: Even though they know that the LD are somewhere, it seems impossible to find them. The staff informs everywhere, but almost no LD come to receive the good education they offer. Neither younger nor elderly LD. Even if the project has been working for 2 years now, only 13 LD have accepted the program. And they have mostly been found through personal contacts.

We must ask: Why is that so? Why do they hide? - I shall not try to answer here. Maybe there is no simple answer. For us in the field of pastoral care for hard of hearing this fact constitutes several challenges:

In our local congregations we seem to have thousands of persons, living a very difficult life, very much needing pastoral care. Far too many of them do not utilize - or utilize too little - the helping programs offered by society. They have little courage, little self esteem, little social contact.

- But most of them are formally members of our congregations!

Can we go and find them? Can we encourage them to try once more whether it might be possible for them to live a full life, after all?

And - are we prepared to spend so much time with them, that would be needed for a proper pastoral care?

Communicating with them is often difficult, of course. Some have learned to use sign assisted speech. Unfortunately not many. Some of them have a natural talent for lip reading, so that a direct conversation is possible - though slow. But with many we would have to write most of what we wish to communicate to them.

Are we prepared, do we have the patience needed to have deep conversations with these persons about their life and pain and relationship with God, and their place in the congregation?

And perhaps establish a good contact between them and their local pastor?

That is one challenge.

The next challenge is the great problem of our Danish project staff: How do we find them?

For this challenge, we in the Churches have possibilities that the official project staff do not have: We have in every village pastors, deacons, church staff with a close knowledge of their local congregation and its members. Our local church staff will know of the local LD.

They just do not know what to do with them. Often they take the LD for mentally disabled persons - unreachable - then they can wash their hands and proceed to other tasks.

So we can discuss how we spread the information needed to the local church staffs. So that each congregation pastor, each deacon knows where he or she can get help when he meets a LD, young or old.

Here it is important to know that you don’t have to be a specialist or specially educated in order to be a good pastoral counselor to LD persons. Education is definitely good and important. Even more important, however, it is to be ready to spend the amount of time needed for listening to these persons, get to know them, and probably have long, partly written conversations with them. Again: With the exception of the LD who know signs. They have special possibilities.

Often you hesitate when you have to deal with a group with special needs. This is something for the specialists, you might think. But it is important to know, that most of the LDs do not like to consult specialists. They would like to be treated as part of their ordinary, normal community. And by the way: who are the specialists? Who partakes in this task, if not for us/if we do not?

Some years ago in Denmark we thought that we ought to build a special congregation for the LD and the hearing impaired. But soon we learned that very few LD and hearing impaired were interested. They missed their natural affinity with their local hearing congregation. An affinity which was not unrealistic - even though this meant a lot of hard work to those involved.

Every pastor and deacon can be a part of this - a the very least - partial claim to affinity and help rebuild it. We could tell the other people who belongs to our congregation how you - given time - could make yourself understood to the LDs. We could copy our service, the liturgical texts and prepare our Sunday sermons in order that the LDs migth/may be able to understand and follow our services.

According to my opinion it is very important, that everyone in your own national church is prepared to distribute these basic principles, so the members of the church staff do not give upon the LDs. That is why the pastoral care for the hard of hearing is so important.

We could for instance introduce our colleagues to this trivial example:

Who is disabled? The deaf people are not handicapped when they interact - they know their language and know how to take part in their cultural community.

Hard of hearing persons have a real handicap. But a least we have a lot of possibilities so that we a least partly can give some practical compensation. E.g. technological solutions.

But the LDs? Most of them are - in every way - even in the companionship of their peers/of their own - disabled. And in the community, they are outcasts(!)

Those of us who are pastors have surely experienced a time when we in a home for the old tried to communicate with old Mrs. NN. We tried to speak as clearly as possibly. We made sure that our faces was clearly visible. We ascertained that the hearing aid was functioning. And still it did not matter. She could not understand (us).

What do we do then? Do we smile at her and continue? Or say something about the weather and go on?

Or do we pick up our pencil and begin to write? Well, it is difficult and slow to write everything down. So do we just write the most important part of what we want to tell?

Or are we the exceptions, who take our time to sit down and write whatever is necessary to conduct a real conversation with pen and paper?

The old lady, she understands our problem. She knows how hard it is. She is not stupid.

No, she is not stupid. But maybe she is thinking that it might be a lot easier if she really were stupid. Often she feels that she is a burden. She hopes perhaps, that the next time the pastor comes to the home he/she will not visit her. It is to embarrassing. - And perhaps her wish will come true…

When it comes to young people it is different. But they too experience something that seems like a brick wall between them and their surroundings.

- I think that even a ordinary pastor should be able to understand this.

What do we do in the church?

Most churches have their own clear answer to this question. When you are deaf you are deaf. Early or late deafened - if you cannot hear you belong to the deaf community. So be it. Next problem, please!

But most of the LDs do not feel at home in the deaf community. Mainly because of the language. Very few of the LDs have learned to sign. Even fewer learns how to communicate fluently with signs. Only the youngest among them have a real possibility to pass the barrier and be part of the deaf community - to emigrate from the world of the hearing people and be integrated as immigrants into the world of the deaf people.

Some LDs who tries be integrated into the world of the deaf people experience, that the deaf people do not welcome them at all. Deaf people often see LDs as handicapped hearing people - that is: strangers. To the deaf people the world is divided into two parts: the deaf people and the people who can hear. Deaf people are those who have / use signs/sign-language as their mother tongue/original language. All others are considered to be people who can hear. So it is! Very few LDs succeed with their attempts to be integrated into the deaf community.

But most LDs - on the other hand - are not young and do not attempt to create a new identity as a deaf person. They see themselves as hearing people, who cannot hear anymore. Whether we seem them in a cultural or a linguistic context they are more or less - homeless.

To us who are a part of the church the LDs presents a special problem. Here are thousands of people who deep in their hearts, linguistically and culturally - belongs to the hearing community - and still we cannot reach them - and they cannot reach us.

Everyone can imagine the need for pastoral care for the LDs. And this need can be described in one word: huge.

In some places the pastor for the deaf have tackled this problem and given real good pastoral care to the LDs.(But) especially the elderly among the LDs do not want to abandon their bonds to the hearing community. They see themselves as hearing people - who just cannot hear anymore. The culture of the deaf community remains alien to them.

On the other hand - especially in Germany and Denmark - there are certain special areas of pastoral work, which concerns the LDs. The pastors who are designated to take care of the need of the hard of hearing/hearing impaired have learned and is obligated to (do so) - also to undertake needs of the pastoral care for the LDs.

Let me tell briefly what we do for the LD in DK.

It may sound like a lot. And we do work a lot. But - we still have more or less the problem that the project staff had: The LD who need us the most - we cannot find them. Some, yes. But far too few. And we tend to get the most contact with the strongest of the LD. Not the ones who need us the most. So we have not solved the problem!

We are two pastors who are primarily responsible of ministering to the needs of the hard of hearing and the LDs. And there are approximately 80 community-pastors who - besides their regular responsibilities to their community - partakes in the pastoral care to the hearing impaired, they are also known as Contact Pastors (KP).

Together we do 70 services a year with full captioning - and a printed sermon, induction loop systems and so on. Most of these services are ordinary (main) services (high mass) of local congregations, and they are only slightly different from what they might ordinary have been - with the necessary requirements of course.

We meet at lot of LDs and severely hearing impaired people at these services and make contacts for the pastoral care.

How do you communicate with the LDs? - The two pastors primarily concerned with the pastoral for the hearing impaired and the LDs have learned the Mouth-Hand-System and use it often. The Mouth-Hand-System is a form of communication that formerly was used by a lot of Danish LDs. In the recent years though the tendency have inclined towards an development of signing accompanying ordinary speaking - and none of the pastors have till now learned signing.

Mound-Hand-System or signing - most of the LDs, especially the elderly people, do not understand either one. With those one has to use the most important methods: Patience. Time. Pencil (or a transportable personal computer).

The most important thing then is not a special training in various communication skills that a few of us might possess. No, the most important thing is to understand what is going on and to have the patience required. Many times the LDs do not want to make any kind of conversation. They know how the conversation normally ends: the hearing person looks more and more pointedly at his watch and at last has to leave - something very important, sure. And he will not come back. So the LDs have ceased to expect at lot from their hearing communication-partner. And we would like to prove to them, that a ordinary well-functioning conversation is possible - and that we will use the necessary time to achieve this. Then the pastoral care can begin.

Besides services and personal pastoral care we offer various special possibilities: seminars and retreats where all the speeches are captioned - that means that we have a secretary who types everything that is said unto a pc - and that very fast. The pc’s text is then projected unto a screen. That means that even the LDs fully are able to participate. At such occasions there are always many good conversations not only among the participating pastors - but also among the LDs and the hard of hearing people.

Among the special possibilities I would like to list our travels. Travelling with every opportunity to care for the needs of the LDs and hearing impaired so that they might for example experience Israel or Rome. Travelling like this you really get to know one another.

When one of the LDs first have experienced "special pastoral care" from one of us, it is not hard to convince him to go to his pastor from the local community and discuss with him/her how the LD in spite of his handicap still can be af part of the local community. The pastor might for example prepare a copy of his sermon in advance, he might see to that the LD once in a while have the opportunity to speak with the pastor alone - not only in those larger groups where conversation is impossible. We are happy to assist in making these contacts possible,

And lastly - we always try to inform our colleagues - the pastors of the local communities about the needs of LDs and the hearing impaired people, in order that the pastors may be actively engaged in the work and so that the LDs will not be seen as mentally disabled people - and consequently been given up as unreachable.

In Denmark we often talk about education and re-education. And that is very important. But this evening I would like to stress the fact that even without special education any pastor or deacon can be a very big help to the LD person: Understanding, motivation, and Patience is the Alfa and Omega to this purpose. And these three abilities should be available in any church. If not we have to have a serious talk with the boss.

Again I have to admit: We try to do a lot in the Church of Denmark. I wish I could tell you that our work is successful - that all the LD of our Church are well taken care of. That would, however, be far from the truth. Yet, we shall keep trying.

Anyway: each of us must consider this: