'Communication, Collaboration, Roles, Disability, Access' by Judith Felson Duchan
Judith Felson Duchan reflects on the way her perspective on communication has changed since visiting Connect
Every year, since 1999 I have made a pilgrimage from my home in Buffalo, New York to England to visit Connect. When at Connect, I usually work with people on research and writing projects. I have often joined groups to get to know people and to take part in what is going on. I occasionally have helped out with the courses and conferences. And I typically spend time just hanging around in that lively café and in meeting rooms talking to people with aphasia and to people who support them.
Besides having fun, I have learned a lot from those at Connect. I have learned not only about Connect's philosophy and about their pioneering services, but also about the lives of people with aphasia who go there. Consequently, I have come to change the way I think about disability and communication in general, and about people with aphasia and their communication, in particular. These are topics I have long been interested in. Throughout the fifty years of my career as a speech language pathologist and academic in the US, I have been studying, teaching, and thinking about different aspects of communication, especially when communication goes awry, like it does sometimes for people who have aphasia.
Here are three ways that I have changed as a result of my experiences at Connect:
1. I have come to realize that communication works like a dance, a partnership, a guessing game. I used to think that communication worked like a fast version of sending a letter, or sending a text message, where one person authors a message and then sends it to another person, whose job is to interpret it. I now think of communication as being much more interactive. It works like a collaboration between people, where one person, the author of the message, may initiate what he or she wants to say and then works together with a communication partner to move it forward.
This delicate collaboration can be derailed just as much by the communication partner as by the person with the communication disability. For example, communication breaks down when partners are hurried, dismissive, and impatient.
Collaboration can also be derailed when communication partners take over the message or move it in an unwanted direction. The partner seems in these cases more like an intrusive ventriloquist, putting unwanted words into the mouths of others—finishing their sentences, filling in words here and there. This intrusive ventriloquism problem is made worse when the person who is creating the message is having difficulty with it, as is often the case for people with aphasia. Michael Hussey, whom I have talked to regularly at Connect, has described his feeling when this happens sometimes as one of “deep sadness because the unwanted words aren't right” but as having to “let it go.”
This collaborative view of communication is central to the training that goes on at Connect. Their courses and training materials empower people with aphasia so that they are less likely to be put in the position of a ventriloquist's puppet. They also provide communication partners with techniques to support the communication of people with aphasia that are respectful and supportive rather than corrective or demeaning.
2. I have also come to realize from my time at Connect that communication depends upon how the communication partners see themselves. I have long known that a person communicates differently when in more dominant and respected roles such as those of teacher, supervisor, or group leader. In those roles people tend to talk more, and oftentimes better. They also feel better about themselves. But I had not fully understood how role affects people with communication disabilities. That is, people who do not communicate as well as expected typically find themselves in submissive roles such as that of a patient, a student, or as someone in need of support or correction.
This powerful influence of one's role on communication can be seen at Connect when people with aphasia take on positions of responsibility in roles as group leaders, members of the board of directors, evaluators on courses, volunteers, advisors, mentors. Their communication in these task-related situations is responded to in very different ways than their communication in therapeutic or educational contexts. They are expected to have good ideas, convey them with confidence, and be responded to with respect. And they typically live up to those expectations. Miscommunications of someone in a responsible role are not as likely to be attributed to the impairment, rather, the problems are also seen as having to do with the skills of the follower, whose job it is to heed the advice or gather information provided by the person with aphasia.
Connect has also worked to upgrade the more submissive roles such as the patient or passive student. Rather than submit to prescribed therapies, people with aphasia at Connect get to choose what sorts of activities they want to take. These may involve music and art—creating and appreciating it. Some involve leadership training and volunteering, others simply involve getting together and talking about common interests. Some are held at Connect, many are in the community. The activities all involve communicating in supportive environments such as conducting in the music group, researching for a local museum, supporting newcomers to Connect, talking with potential donors at a fund raising event, awareness raising at talks to local community organizations, events and courses.
Service offerings at Connect, then, are elective activities taken for self-improvement and self-fulfillment rather than being prescribed therapy for remediation. The service model is more like that offered in adult education settings than in medical ones.
This attention to the creation of positive and self fulfilling roles for people with aphasia required a major shift in my assumptions about how to support people with aphasia, and how people with is what makes Connect different from health care providers
3. Finally, I have learned from people with aphasia at Connect that their experience of disability has as much or more to more to do with the restricted access afforded them than it does their ability to use language. When judging the severity of a person's condition, those with aphasia ask about how the person gets about, who they talk to, what they do rather than how well they understand or make themselves understood. They roll their eyes at professionals who base their severity judgments on a person's test performance. Furthermore, when considering ways to make their lives better people with aphasia at Connect are just as likely to talk in terms of communication access as their own performance.
Communication access has become a key concern for those at Connect. The staff and people with aphasia present workshops, and courses around the UK, and design materials on the topic with the aim of teach service providers how to make their offerings more accessible. For example, Connect works with museums, health care providers, and speech therapists to evaluate and improve access of their written materials, their building signage, and the ways they interact with their clientele.
As a result of my years of being involved with Connect, I have come to see that a person's disability is not only about their communication impairment but also about their access to communication, their roles in communication, and their opportunities for partaking in whatever else the world has to offer them.
What a worthwhile journey for me—not just from the US to England, but from my traditional renderings of communication and disability to the more liberating ones evidenced by those at Connect.
Judith would like to thank Michael and Margaret Hussey for their help with writing this article.