Presentation on “How service user involvement should relate to the abstract nature of science” by Sam Fellowes.
Wednesday the 9th of March, 4pm to 5pm, Fylde C32.
Abstract:
Individuals taking a neurodiversity or an epistemic injustice approach have argued that diagnosed individuals have an important role to play in psychiatric research. They argue that service users should not simply be test subjects but should be involved in setting the research questions, in deciding how the research should be conducted and in interpreting the research data. In this paper I consider how lived experience relates to the goal of abstraction in science. Generally, scientific theories are better when they are abstract or idealised, abstracting away particular instances to produce generalised notions that are applicable to many different instances. Generality helps the theory cover more phenomena, make more widely applicable predictions and reduce the complexities of applying the theory to the world. As such, science will be epistemologically weak if it ignores the abstract in favour of the particular.
Lived experience of service users is, by its nature, particular. My experiences are my own. As such, reports of my own experiences only become relevant to other autistic individuals by abstracting at least some of the particularity from myself. This then raises the question of how such abstracting should be done. I consider philosophy of science on model building to make suggestions as to how this should be done. Additionally, given that the abstract needs multiple particular instances, we need multiple service users to actively combine their experience and willingly abstract away parts of their experiences when conducting research. This will require decision making which then raises the question of what values should be employed in making these decisions. Also, there is significant danger that this process of abstracting could leave some important experiences abstracted away. Unless service users engage in this process of abstracting there is a danger the generality of science will be reduced, resulting in science being epistemologically weaker, but abstracting away the wrong experiences will also lead to science being epistemologically weaker.
Then I consider how the abstract can influence particular. To understand my own experiences I need to draw upon multiple theoretical concepts. In some cases the concept will be the diagnosis I am studying within participatory research. To understand my experiences as being experience of autism I first need the abstract concept of autism. I consider how, on one hand, the abstract concept of autism can epistemologically enhance our understanding of my particular experience but, on the other hand, it is difficult to critique the notion of autism through my own experience given that I need the abstract concept of autism to understand some of my own experiences. I consider the epistemological consequences of this and draw upon philosophy of science on models to consider how problematic this is.