– learning to live with a changed body and life
What happens when someone experiences a profound change in their body, their abilities and their life? Does the world change when the body changes? And, if so, how does one learn to live in this changed world?
“For some people life goes on without anything serious happening to them, for others something radical happens that affects almost everything in their lives. Becoming visually impaired or blind as an adult is one example of how someone’s life can drastically change, sometimes within a shorter time, sometimes over a longer period. In several empirical studies, I have followed and interviewed people in their attempts to learn to handle a new life-situation related to visual disability, and their struggle to handle and find new directions in their lives,” said Inger Berndtsson of the Department of Education and Special Education at the University of Gothenburg.
“I’m trying to analyse how people understand what they are going through. Looking at rehabilitation from the inside. The research is about clarifying the pedagogical process in rehabilitation and developing a practice-based theory.”
“For many something happens that overturns their preconceptions of their life and future. What they used to do no longer works. There is a crack or break. Their world and life start to crumble. They don’t recognise their own life. But eventually there is a possibility to live life in a new and different way, an endeavour to make life work again. I’m asking how we face a changed lifeworld.”
Berndtsson explained that to understand this she is using lifeworld phenomenology. The idea of lifeworld was originally conceptualised by Austrian-German philosopher and mathematician Edmund Husserl who established the school of phenomenology. His ideas were further developed by Martin Heidegger and Maurice Merleau-Ponty who argued for the role of perception in the human experience of the world. He emphasised the body as the primary site of knowing in the world and perception as a dialogue between the body and the world.
“Phenomenology is closely aligned to existence, it places beings in existence, fostering understanding on the basis of existence,” said Berndtsson.
“The everyday lifeworld could be described as the world where we live our daily lives. The lifeworld is a way to understand reality and takes as its starting point the human being as a lived body in the world, integrating mind and body into a body subject,” she continued. “From this theory the individual’s lived experiences can be researched to guide an understanding of how people live and experience their lives. Essentially, the point is that the world changes when the body changes, because life and the world are intertwined, as Merleau-Ponty emphasised.”
Berndtsson explained some of the concepts that underlie her work including the Lived body – inhabiting the world by being in the world and an intertwinement of body and soul (as a body subject); Lived space and time – inhabiting time and space in our lived experience; the Social world – our relationship with other bodies in the world; Everyday lifeworld – our daily experience, how we are active in the world and the boundaries of a particular world; and, the Horizon – which may be constantly moving, the end of what we can perceive but also a potential new beginning.
She has examined the lived experience of how the lifeworld is experienced as a break or disruption when someone becomes visually impaired, and how it is possible to lead an active life again. “These learning processes involve existence, perception and sociality, very closely related and intertwined to allow the possibility to appropriate the changed world and make this world your own world.”
An insider’s perspective
Her methodology involves letting the voices of those with personal experience be heard and has included capturing the life stories and narratives of six individuals ranging in age from 30 to 63 years old with varying visual impairments and life situations.
“It’s about sitting in another’s chair, listening to their narrative, finding mutual references and even trying to use their tools and assistive devices,” she explained. “Such stories are not always received or made available.”
She described some of the experiences the participants expressed: “They can’t look at life as if nothing happened. Your habitual life breaks down. You realise life won’t be the same. It’s a grieving process. There are breaks – turning points, a before and after.”
“You experience the body as an object not subject. There is a sense of no longer being in your body. As the body changes, the world changes. Other people experience you differently. I’m not the person I was. The world changes based on the body’s connection to the world.”
“Life gets quiet in the space between the old and new life,” she explained. “The world has shrunk and new processes are not learnt at the pace people think they should be. They no longer relate to the space in the same way as before and deal with grief and loss. The new world is not explored. This gap between life and the world can be for a short or long period.”
“But eventually the time horizon opens up and they are no longer lost in the present. They realise it won’t get better and become a subject again with the possibility of relating to a future, engaging with the world and their new social identity and starting to do something new. Learning to create a new world, actively grasping it with a new body, and learning anew to create a substantial relationship with the world.”
She described these various concepts of the body as existential body (identifiable with feelings and thoughts), perceptual body (our perception of the world), social body (how we relate to others and how disability is assimilated in different ways), the body of activity (including how the boundaries of the world are open and not limited to the current context and relearning to manage the activities of daily life, with both limits and new possibilities).
“There is intertwined learning – where perception, the social and existential are all intertwined,” she added. “The world and life are linked together in a genuine flow – a world open to change but also unfinished.”
In discussion, she addressed the difference in being blind from birth – “They don’t know they are different unless the parents talk about blindness as a problem therefore the children don’t go through this process but the parents may.”
She also pointed to the need for more understanding of the body as a site of research, as well as for work looking at how the lifeworld model can also be studied from an age perspective as the body’s abilities deteriorate with age.
“Lifeworld-based rehabilitation is about rediscovering the world as it is experienced. It’s important to listen to the stories, to dialogue, and to use lifeworld theories to interpret people’s stories.”
Michelle Galloway: Part-time media officer at STIAS
Photograph: Ignus Dreyer