Paper short abstract:

In health care and politics nowadays, value in the sense of 'the good life' is turned into a quality of life score. We study a practice where 'quality quantification' seems impossible: caring for people with severe multiple handicaps. In doing this, the study sheds light on the normativity of STS approaches.

Paper long abstract:

Quality of life (QoL) is becoming a central concept in health care, especially in allocation decisions. Crucial for all versions of the concept is a system of techniques (a technology) of quantification which includes instruments for self-scoring and for quantified observation. Attempts are made to integrate the various techniques into a 'dashboard' of measurers.

I will report on a study that is, ironically, part of a national research program aiming at the construction of such a 'dashboard'. Using ethnography and interviewing, it studies practices of the good life in an area where quantitative techniques get into serious trouble: the care for people with very severe and multiple handicaps, who will never reach a cognitive development above 2 years of age and have several other problems, such as epilepsy and self-injuring behaviour.

The problem is that quantification of QoL may lead to restrictions in the care for these people (they will score very low with hardly any chance of improvement); non-quantification, however, may have the identical effect. The issue is whether qualitative forms of QoL assessment (stories, images, interactions) should and can be made to do the political work that quantitative instruments are increasingly made to do.

On the basis of our empirical work, I will try to show, firstly, why STS approaches, with their sensibility to the normative workings of things and with their focus on qualitative work, are crucial here. Secondly, I will argue that studies such as this may be fruitful to develop the normativity of STS itself.