Nordic Project - a unique source for professional and personal reflection and discussion
Workshop presentation given at the DbI world conference, Perth, Australia, 26. September 2007, by Bettina U. Møller and Ole E. Mortensen, Information Center for Acquired Deafblindness
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Agenda
- About us
- Organisational framework for the project
- Content of the project
- Examples
- Maria goes to university
- Getting support
- Being active
- How can the booklets be put to use?
- Discussion
About us
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- Established 1993
- Herlev, near Copenhagen, Denmark
- Aim: To provide accurate, up-to-date and relevant information for professionals working with people with acquired deafblindness
- Website, printed materials, magazine, videos, presentations, courses etc.
- Staff of four people
- National and international contacts and projects
Project framework
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- A systematic compilation over a 5-year period of the experiences of deafblind people with a progressive impairment
- 1999 (conception of the idea) to 2005 (birth of the project booklets)
- Joint venture between Denmark, Sweden, Norway, Iceland
- 20 deafblind persons – 8 Usher type I, 12 Usher type II
- Interviewed six times (roughly once a year) over a five year period
- Interviewers: deafblind counsellors and other professionals in the field
- Initiated, organised, coordinated and data analysed by the Information Center for Acquired Deafblindness – primarily the former director Kirsten Jansbøl and Birgitte Ravn Olesen
- Nordic steering group (also with representation of the Nordic associations for deafblind people)
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- Overall objective: To gather insight of the consequences of a progressive hearing and sight disability
- Generate new knowledge for use by professionals and others involved in counseling deafblind people, their relatives and care professionals.
Introduction about understandings underlying the project
Scientific knowledge is often thought about as knowledge from natural sciences, i.e. new information about genetics and screening as Claes Möller and Bill Kimberling will talk about in their presentation tomorrow.
In this scientific field – humanities – we do not produce this sort of evidence based knowledge.
The results of this project must not be understood as true knowledge about what it is like to be a person with acquired deafblindness.
In collaboration with the people with acquired deafblindness who told their stories and the professionals who interviewed them, we have produced an offer of knowledge.
It is not "the true story". It is one perspective, and we hope it is an important one, but it is for you to judge that.
The success of the study depends on how useful it is for people with acquired deafblindness and professionals and relatives connected to this group.
A fundamental aspect of the project has been to focus on the deafblind person’s own narratives about his or her experiences with a progressive disability.
We have also focused on which resources, both individual ones and those in their environment; contribute to create action possibilities for the individual.
In book 1 we describe the theories and methods in details.
About the booklets
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- Theory and methods
- Receiving a diagnosis
- Getting support
- Being active
- Getting an education and work
- Narratives of everyday life
There are six booklets from the project. One is about the theory, methods and organisation behind the project.
The following four booklets each discuss one topic that has been in focus during the interviews and that has proven central for the deafblind participants
The last one contains narratives of everyday life of eight deafblind persons, whose identity we have contructed based on the 20 interviews.
Each of the booklets contain an introduction to the topic that also sketches/outlines the theoretical framework for the discussion of the topic. The main part of the booklets are based on the interviews and contain summaries and analysis of the information as well as quotes from the deafblind informants.
One of the reasons for not publishing one big report is that it should be possible for a deafblind person or a professional to give a booklet on a specific topic to someone who needs that information.
We try indirectly to encourage the readers to actually get into depht with each of the topics by considereing the booklets both as unique pieces but also as part of a whole, namely the entire project.
PowerPoint slide – Hæfterne popper op
Unfortunately, time does not permit us to go into detail with the content of each booklet. So we will take a closer look at a couple of the cases discussed in the booklets.
This should give you an idea of the type and character of knowledge that has been generated in the project.
I wil introduce you to Maria and some of her statements regarding “Getting an education and work”
Getting an education and work
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“For a person with such a serious disability as mine, in spite of principles of positive special treatment, it will be difficult to get work and so it is important to have competences which can weigh against people’s prejudices about the disabled.”
(Maria, 19, medium-level hearing and visual impairment)
This is her motivation for entering university and preparing for getting a job.
Maria says these words in the first interview. She is a very bright young student and both she and we feel sure that she will be able to get a degree in psychology as she wishes to.
Her parents support her and she is very good at asking for what she needs to manage to live as good as possible.
In the third interview Maria has started at university and is doing well in the study of psychology. It is a big study programme, which in the first year is organized on lectures for up to 100 students. Not an easy environment for a person with a dual sensory impairment.
Before the first semester started Maria was in contact with several consultancy offices for students with impairments. Here she presented her requirements that she had formulated after talking with hearing impaired friends about their experience of studying. Everybody did their job to make it smooth for Maria to organize her new study.
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Maria made preparations for her university studies in several ways:
- She met the study guidance department where she presented her requirements
- She walked around on the university campus many times before study start
- She asked for and was given a portable computer
- She ensured the reservation of a place in the fron trow of the auditorium and the presence of an FM device
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Maria was also offered compensation, which she did not want:
- Interpreter or companion in connection with studying activities
- A special light next to her place in the auditorium
- Something else that she does not remember (at the time of the interview)
Maria thinks indeed that the professionals that she meets fare to often are in a hurry to suply her with new aids.
Still, everything seems to be perfect. But problems soon arise. The lectures move to other rooms without Maria seeing the note about this decision, the note on her chair saying "reserved" is often removed and some professors move around in the room and do not want to use a microphone during their lectures.
Maria gradually gives up taking part in the lectures and in stead tries to read the curriculum by herself.
However, at the fourth interview Maria has left university.
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“I had to give up. It is sad in a way, but I can always re-apply.”
There are several reasons for Maria having to make this decision.
Some have to do with the choice and evaluations that Maria herself makes.
Some have to do with the insufficient follow up of the arrangement and practical organisation of her studies. This is an example of some of the issues that are discussed in the booklet “Getting an education and work” from the Nordic Project.
Getting support
A 52-year-old informant is asked the question if he has ever been given advice that he could not use, and answers:
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“Last Friday, when I was at the eye clinic where the eye specialist said that if I thought it was too difficult to read, I could obtain a CCTV. So I said stop, I can read well today. Upgrading to bigger aids is not for me. I think you must be careful with that; there is not a problem with technology today, but it must occur in line with your need.”
(Johan, 52, medium-level hearing and visual Impairment)
It sounds as if Johan does not experience the information given by the eye specialist as a possibility that he can express an opinion on. Instead he experiences the professional taking over and defining his needs, and thereby the offer of aids becomes overwhelming.
Others say that they would like to be informed so they can make up their own minds, but do not want to make use of technical aids until it is absolutely necessary.
This may for example be because they feel that the use of aids also comes at a price.
There must be a reasonable relation between the endeavor that must be made to acquaint you with new aids, and the benefits of using the new aid. Each aid creates dependency: a guide dog must be looked after, also when you are going on holiday, a hearing aid has to be adjusted, and a wire loop cuts you off from other sounds in the room. Wanting to manage without aids can be a matter of wanting to be in charge of ones life as much as possible.
It is a great challenge for the professional to meet acquired deaf-blind people in a way that shows them respect and increases their possibilities of acting competently in relation to their goals.
Being active
This booklet focuses on the consequences that the impairment has on taking part and being active in in one's family life, in leisure activities and in society as such. Often full participation here requires the help from the outside, often in the form of a contact person, guide/interpreter, intervenor.
Many factors play a role in the opportunity to take equal part. Obviously, the vision and hearing status is very important here. If vision and/or hearing deteriorates, the same does the possibility of taking full part in the life and world around you.
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“I don’t have trouble hearing my children when I am alone with one of them. But when the kids are talking between themselves – I might just as well forget all about trying to keep up. It is getting harder and harder to step in or mediate when the kids start quarrelling."
(33 years old, moderate hearing and visual impairment)
In this case, the vision and hearing impairment restricts the father from taking full part in the family life.
Because it is so strenuous to have an impairment like deafblindness, we see a clear difference in the level of activity of those informants who hold jobs and those who don’t when it comes to taking part in social life. In most cases, the informants who have jobs experience their jobs as so demanding that they do not have the energy for anything else. Besides working, there is of course cleaning, doing the laundry, shopping, etc.
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“Sometimes I notice that I can’t be together with very many others ... I get tired when there are many people, because of all that with my eyesight. I would rather do things I can relax with; I read a little, read my e-mail, watch TV in the evening. I’d really like going for a walk in the woods on Sundays, but I don’t have the energy. I have to save my energy for the next workday."
(48 years old, deaf, moderate vision impairment)
Of the deaf persons who were holding jobs in the project, three were single and they all seem to have no friends. They spend all their energy at work and on practical chores in the home, so that their leisure activities are limited to reading with the help of technology.
It is worth mentioning that many informants say that they consider that they lead a good life with many possibilities – despite their impairment. At the same time, they see themselves as atypical for the group of deafblind persons. In other words they consider other deafblind persons to cope worse than they do.
How can the booklets be used?
The Nordic Project has generated a great deal of information on deafblind people's own experiences of different aspects of life.
And now we face the next challenge: How do we go about making sure that the information in the project is converted in to knowledge and put to practical use by professionals and by people with deafblindness?
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- Use "Worth considering" in the booklets
- Discuss the stories in the booklet "Narratives of everyday life
- Experiment with the "Life story and competence oriented interview-method
Re 1.
One possibility could be to select one of the booklets discussing an issue that you find of particular interest and relevance.
Read it carefully and reflect on it based on your own experience – either alone or with colleagues.
To facilitate this reflection – if necessary - each booklet ends with a section entitled "Worth considering" containing thoughts and questions pointing out some of the key issues of the booklet.
Example:
In the booklet about getting support we describe how many informants experience that their consultans always think they know what is best for them. This could make consultants (and other professionals) consider their function in the meeting with deafblind people.
Are we the ones who deliver the ready made solutions and always think about how to match the problems of the deafblind person with the technical aids that are available?
One thing that has come up during our discussions of the project is this: professionals very often focus on practical problems because they can actually suggest solutions to them.
In Denmark we have a saying: If your only available tool is a hammer, you tend to see all problems as nails.
But just as everybody else, people with acquired deafblindness have many thoughts and worries that are not of a practical nature. They need somebody who wants to listen abd to them.
So as professionals we must ask ourselves: Can we act as “midwives” and counsellors whose primary function is to listen and to act as a sparring partner for thoughts and ideas – no matter if they are practical, social or psychological?
For people with acquired deafblindness it is worth considering how they can communicate in ways that puts them on top of the process and in stead of being pushed around by others.
Re 2
Another possibility is to use one of the stories in the booklet "Narratives of everyday life" as the starting point for meetings about experiences.
This booklet contains eight different stories of deafblind people coping with erveryday life and you can discuss with friends or colleagues if the narratives are trustworthy or where you find them too idealizing or too focused on problems.
It is also possible to discuss:
- What does the person say about his/her life?
- What can we recognise, what is very different from our experiences?
- What doesn't he/she say anything about?
and so on…
Re 3.
The interview method was developed with great deliberation. It is described in the first booklet on theory and method, and this description can be used to reflect on what it is that we are asking, and how we ask.
We know that it isn't possible to have in-depth interviews with all clients.
The consultants in the projects have put an enormous effort into the 5 years of making and analyzing one interview every year.
Nobody can do that with all their clients.
But a person with acquired deafblindness can - as everybody else - be in situation where he or she needs help to be able to talk about his or her life in order to be able to find out what to do to go on.
I think all of us know situations where we tell a good friend about a problem and while we are telling about it, we find a solution.
Just because somebody didn´t interrupt or suggest anything, but only listened carefully to our thoughts.
This goes for instance for people with acquired deafblindness who
- are young and do not know what to do after primary school
- are 30 years old and find it difficult to maintain your role in the family as a partner and a parent
- are 45 years old and have difficulties in managing their work because of their increasing impairment
- or have other types of life crisis
One of the informants said in the last interview:
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”I have thought a lot about what the project has meant to me. I have discovered new angles of myself. Occasionally we have had discussions and I have thought a lot about them afterwards (long pause). I have had some things confirmed when we talk together like this. I think it has been positive and instructive. You learn to see things differently.
A social counsellor only works with problems, for example transport. We never talk about my everyday life, my routines and my network. I have never spoken about those problems either to a psychologist or to a social counsellor. They just look for a problem and then talk about it over and over again.
Thank you for listening
Discussion