Review: Experiences from People with Deafblindness
By Ilene D. Miner, LCSW, New York
Editor's note: We have asked Ilene Miner to review the booklets from the Nordic Project. Ilene Miner holds a degree in clinical social work and has worked with services to deaf and deafblind people for many years at - among other places - the Helen Keller Center and the League for the Hard of Hearing. Among her particular interests is Usher syndrome, and she has published several articles, book chapters and other publications as well as given numerous presentations on the topic. This review was first published in the Information Center's newsletter 01/2006.
The booklets on Deafblindness of the Nordic Project, published by the Information Center for Acquired Deafblindness, taken all together present a picture of the lives of 20 deafblind people in Norway, Sweden, Iceland, and Denmark. The members of the study were interviewed yearly for five years, not only giving a snapshot of their lives, but a longitudinal look at lives and changes over time.
This kind of longitudinal study has never been completed before and contributes enormously to our understanding of the lives, feelings, opinions, and perceptions of people with Usher Syndrome.
What is extraordinary is that the patterns, problems, observations, needs, and conclusions that are identified are drawn from the signs, words, and lives of people with Usher themselves, not from what professionals think that people with Usher need.
The informants are articulate and willing to share their lives. The interviewers are clearly highly skilled and able to make the interviewers comfortable enough to share this material and their lives.
These booklets are important for people with Usher Syndrome, for families and friends of people with Usher syndrome, and also for every professional involved with people with Usher. Although some people with Usher often know others with Usher, it is not common for people to reveal themselves to others with the depth that they do here. Informants said that they wanted to know about the lives of others and these booklets provide that opportunity.
Many friends and families never share feelings on the level presented in these booklets. In my professional work, I have often spoken of the well-known phenomenon of the "elephant in the living room": a family member with Usher which is never discussed. For so many people, these booklets can provide a starting point for coming together around this "elephant in the living room."
For professionals, reading these booklets is a humbling experience for it shows us clearly the perceptions of those we serve. These booklets highlight some of the issues that we have been missing and our own attitudes that cause difficulty for our clients. We are reminded again that the most important person and mentor for a person with Usher is others with Usher. We service providers are NOT the most important people in the lives of deafblind people.
For me, as a provider from the US, reading about the lives of people with Usher in the Nordic countries leaves me intensely envious; the baseline of services, i.e. the availability of contact persons, and interpreters, although not perfect, means that deafblind people can lead and control their lives.
Some of what is a daily struggle in the US, securing services of a contact person and/or interpreter in many cities, states, and towns, is less of an issue in these four Nordic countries.
These booklets should be available to people with Usher, families, providers, counselors, schools and worksites. They provide crucial insight and information, a window into lives and experiences that are not available elsewhere.
Throughout the booklets, applicable information and research is discussed and connected to issues for people with Usher. This provides context and a framework for understanding the comments of informants in their own life cycle.
There is important information in each booklet that can inform the work of every professional in the field. It is impossible to review each booklet in great detail, but I would not that there are nuggets of important information and insight in each booklet.
Each booklet ends with a Summary section and a section called Worth Thinking About wherein there are conclusions and trends and of course questions about the implications of what has been found.
Brief review of important issues
Diagnosis
The concept of one’s expected life story and its variance from one’s current life story is significant in that the person with Usher has the work of combining these two lives into a coherent and comprehensible whole. This insight is crucial to understanding what happens to people with Usher.
People with Usher who knew others with Usher prior to receiving their own diagnosis coped better than those who did not know others. This relates to the issues that come up repeatedly in the booklets of mastery, of comprehensibility of one’s life. One cannot imagine mastering life as a deafblind person without knowing how people with Usher actually live and feel.
The discussion of problem focused coping and emotion focused coping, while interesting, seems to be arbitrary; in my own experience I have found that people benefit from both strategies, and in fact do use both sometimes together and sometimes separately at different points in their lives.
People with Usher report feeling different or that something was wrong as children. This finding, and parental secret keeping are part of our experience in the US as well; disruption of trust is significant.
It is important to remember and appreciate the losses along the road: loss of ease of communication, loss of ease of social relationships, loss of activities, loss of hobbies, loss of ease of mobility, loss spontaneity of just leaving the house for fun, loss of work, loss of role in family, loss of feelings of competence and the pain involved in these losses.
The work of forming a new and coherent sense of self, of adaptation and acceptance reminds us all, people with Usher, family, friends, providers, that this is an ongoing process and as is mentioned later in other booklets, that this is not accomplished in a moment in time.
“Acceptance” along with adaptation, are dynamic processes that are lifelong. Without information and support, the threat to integrity is significant and will make the work of acceptance more difficult. People may have emotional setbacks as they struggle to integrate their new self.
Important to note are some thoughts and comments about providers having their own agenda and therefore not attending to the perceptions of the person with Usher.
Getting Support
The issues of experience, competence to act, meaningfulness in one’s life, self worth, coherence, integrity, and mastery are recurrent practical and emotional themes throughout these booklets. The importance of gaining both support and practical information from others with Usher is also a recurrent theme.
The issue of needing to ask for help can be a source of pain and emotional conflict for the independent person; that too is a process.
The right of people with Usher for information to increase competence sometimes comes into conflict with a system whose goal is to provide care but not necessarily to increase independence. These are issues for those of us who are professionals to remember.
The role of family support including parents of adult deafblind people is crucial, as is support from other deaflbind people. Some informants do report isolation and depression as communication becomes more laborious. The role of the psychologist on a short tem basis is mentioned as helpful but securing services can be difficult
Being Active
The impact of deafblindness on communication and social interaction is profound, not just on what is being said or signed but on interpretation of the world because so much visual and aural information is missed. Relationships and experiences inform communication, and communication informs experience and relationships. The pain in discussion of communication difficulty is palpable, this loss of connection with people.
There is a separation from family communication and therefore loss of the closeness of relationships.
In some cases, further loss of vision has led to use of interpreter and/or contact person thereby expanding social contacts instead of restricting them. But some people feel embarrassed to admit their visual problems.
Also informants report that other people view them differently, as a bit "slow", not understanding their vision and hearing loss. Many informants credit family and friends for keeping them involved with people and the world.
Issues of the availability of contact persons and interpreters are vital to continued involvement in the larger world. Working interviewees reported fewer leisure time activities and involvement because between work and running their households, there is little time left over for just fun. Those who aren’t working are more involved in activities.
Many interviewees report that their contact person is their most essential connection with the outside world. Both interpreter and the contact person are essential and have different roles; without them, isolation can ensue, even from family
Work and Education
Although many deafblind people work a significant finding is that none works till regular retirement age. Work in a deaf or deafblind setting did not make things easier. As vision deteriorated, the tasks themselves became more difficult.
Feeling that one could not longer perform or in fact not being able to perform, even with aids, led people to leave work.; sometimes the job site asked them to leave. Work is an integral part of identity and some informants reported severe emotional difficulty upon leaving work.
People with acquired deafblindness do receive an education but their long term choices of program and/or career were fewer. Informants reported very difficult times in school, of being teased, of being thought slow and of being clumsy. School was often a time of pain.
As they continued education other problems ensued. Getting needed aids and support in the classroom settings sometimes became impossible and contributed to some students leaving their studies prematurely.
Involvement as a volunteer in the Nordic deafblind organizations is very important to those who participate and it allows the possibility of contributing to enhancing the disability agenda.
Narratives of every day life
The narratives which are compilations of comments and experiences are enlightening, but they are fictitious stories woven from the lives of informants. They are arranged in the order of ascending age and give narrative over the life cycle. I find this framework to be useful, in that one can see the impact of Usher over time.
In Summary
These booklets make an important contribution to the field of acquired deafblindness and Usher Syndrome. There is so much information about the real lives of people and their struggles and joys that is impossible for the average person to know about. We all benefit from reading these booklets.
Additionally for readers to remember is that this information comes from people with Usher themselves, not from professionals or even from family around the person with Usher. These are the real experiences and feelings of people with Usher Syndrome, living their lives quite fully.
The arrangement of interviews by topic at yearly intervals without including retrospective changes in the one year period in some way loses the benefit of interviewing longitudinally. Knowing how informants coped with a setback or handled a difficult experience they faced during the previous year would have provided information to others facing that situation.
The recurrent themes of communication, interaction, life and work, the struggle to find meaning in a new and different life are woven throughout. We all benefit and grow from reading about Life with Usher from the viewpoint of the person with Usher. This is the heart of the beauty and importance of this series.
The lives of people with Usher are each complicated and unique. There are of course commonalities with others who have acquired progressive disability, such as the need to re-grieve and reintegrate losses and changes over time, to develop a new integrated and cohesive sense of self, the impact on life’s meaning and relationships, there are few other situations in which communication and therefore one’s lifeline can be lost.
The publication of these booklets is extremely important for people with Usher, for their families, their friends, their workmates, and for the professionals who work with those with Usher. The Project is to be commended for this extraordinary undertaking. I only wish the project could have taken place in the US as well!
Ilene Miner, LCSW
March 14, 2005