Who is the one caring and who is the one being cared for? The issue is brought to a head in a study of disabled elderly couples, in the form of a thesis at Linköping University.
Providing care is possible, even if we are in great need of receiving it. Joy Torgé shows this in her study of nine elderly couples where both partners have physical disabilities. Those who took part in the study were between the ages of 60 and 84, and had suffered from their physical disability for at least 20 years. It might have been as a result of a disease such as MS, polio or cerebral palsy, or they may have reduced mobility for other reasons, or be blind. Ms Torgé prepared her thesis as part of the Att åldras med funktionshinder (Ageing with a disability) research project at NISAL, the National Institute for the Study of Ageing and Later Life.
In interviews, the elderly couples describe what life is like for them, how they manage their daily lives and how they view the future. Ms Torgé shows how the disabled help one another as much as they can in their couples. It is a question of integrity:
“By helping each other they become more independent of other people. In this way they protect their integrity, their feeling of independence and freedom.”
The line between the person giving care and the person receiving it is erased or constantly breached in the vicissitudes of daily life.
“We traditionally categorise children, the elderly and the disabled as care receivers but this is an oversimplification,” says Ms Torgé.
But caring for each other can also be a requirement, a moral duty, almost an obligation. The idea is to achieve a feeling of freedom in one sense, by fulfilling a duty in another sense.
In her thesis she challenges traditional dichotomies, both between care givers and care receivers and between independent and dependent. Both can apply at the same time; they are not mutually exclusive. She also shows how the border between what we call “care” and “service” is slippery. From the point of view of definition, care is used for what we are not able to do ourselves, while service includes things we should be able to do for ourselves. But in the daily life of disabled couples this can shift from day to day.
Finally the study shows that “good ageing” can be very different. The elderly are not a homogeneous group, Ms Torgé states, and the normal image we have of good ageing is not always correct.
“From outside, these disabled people seem to have bad lives, to be unhappy and to be a care burden for others. But they do not see themselves this way. They are generally content, think they have a good life, and are ageing well despite growing old together with their long-term physical disabilities.”Joy Torgé defended her thesis on 21 March at NISAL. The thesis is titled “Ageing and Caring as Couples with Disabilities.”