‘Not fitting in’: negotiating multiple illnesses and/ or disabilities

Abstract

The existing social sciences literature has placed considerable emphasis on the
experiences of people living with singular illnesses or disabilities (Clarke and Griffin 2008). In
this thesis it will be argued that it is also important to explore people’s experiences of
negotiating multiple illnesses and/ or disabilities. The number of people living with three or
more long- term conditions in England is expected to rise from 1.9 million in 2008 to 2.9
million in 2018 (Department of Health 2012). Despite this significant increase, the voices of
people negotiating multiple illnesses and/ or disabilities are rarely heard in academia,
politics, activism, medicine, education, employment and civic society.
Using data generated during semi- structured interviews conducted in the North- East of
England, this piece of research explores the extent to which people negotiating multiple
illnesses and/ or disabilities present a challenge to dominant expectations about the
functions, capacities and conduct of bodies across time and space. I will specifically examine
the ways in which participants in this research do not ‘fit into’ three important settings/
contexts: (i) clinical encounters, (ii) spaces of mobility and (iii) imaginations of (hopeful)
futures. Predominantly shaped by epistemological, methodological and empirical insights
from existing feminist social sciences literature, this research focuses on the individual and
collective (emotional, relational, material) implications of negotiating the (often) uncertain,
confusing and incomprehensible bodily experiences associated with ‘managing’ multiple
illnesses and/ or disabilities.
As well as providing a space in which the voices of this previously silenced group of people
are heard, this thesis prompts consideration of the structures, processes and practices that
shape and constrain people negotiating multiple illnesses and/ or disabilities. Addressing
such problems necessarily involves destabilising accepted norms about how bodies ‘should’
operate in particular spaces, at particular times and, thus, presents a critique to dominant
and standardised ideas about how our society ‘should’ be organised. One important
consequence of the contravention of such societal expectations by people negotiating
multiple illnesses and/ or disabilities is the sense that multiply ill and/ or disabled bodies are
less valuable than other bodies: an idea that this research seeks to challenge. In doing so,
this thesis not only contributes to the development of the existing social sciences literature
that currently focuses on experiences of people with singular illnesses and/ or disabilities,
but also provides discussion that medics, activists and policy makers (amongst others) may
find interesting.