Perspectives
Book
Illness as a philosophical tool
When once I was bed-bound with
back pain, I reached for the words of
another invalid, Marcel Proust, and
began to make headway with his
experience of lost time. Recovering
6 months later, I had not come to the
end of Remembrance of Things Past,
but I had learned that the minutiae
of everyday lived experience can have
their own fascination (even if Proust
never quite addressed his own asthma
directly). This approach to life resonates
with philosopher Havi Carels book
Phenomenology of Illness. Carel laments
that philosophers, traditionally men,
neglect a high proportion of what
matters to peoplelove, family,
children, ageing, and illness. With the
exception of the Stoics and Epicureans,
who do discuss coming to terms with
frailty and mortality, most subsequent
philosophy has concentrated on more
ethereal and less embodied affairs.
One thing that excited me about
this book is that Carel makes such a
powerful argument for the voices and
experiences of patients to be recognised
and respected within clinical practice.
She expands on Miranda Frickers idea
of epistemic injustice, referring to
how professionals neither understand
nor give weight to the lived experience
of illness. For example, Carel explores
the interesting paradox that empirical
data show that people with illness and
impairment can nevertheless have a
good quality of life.
This message is gradually percolating
through medical education. I run a
module on our medical degree where
students can encounter people who live
with ill-health or impairment, with the
aim of expanding their understanding
of what it feels like to be blind, or to be
deaf, to have aphasia, or to experience
psychosis. After hearing the harrowing
life stories of two people with severe
mental illness, one student came up
afterwards to thank them: I used to be
frightened of people like you, she said,
www.thelancet.com Vol 389 April 8, 2017 1387
but now I understand that youre just
like me.
Carels own illness, lymphangio
leiomyomatosis (LAM), informs
her writing. She is able to write an
outstanding chapter on breathlessness,
the topic of other multidisciplinary
investigations on which her team are
embarked on in their Life of Breath
project. Carel writes: Trapped. That is
what breathlessness feels like. Trapped
in the web of uncertainty, bodily
doubt, practical obstacles, and fear.
The deepest fear you can think of. The
fear of suffocation, of being unable
to breathe, the fear of collapsing,
desaturated to the point of respiratory
failure. Surely such feelings and
experiences should be represented
within the medical curriculum, if
trainee clinicians are to have insight
into the lived experience of illness and
impairment, rather than simply disease
pathologies and therapies.
Carel talks to the medical
profession, to her fellow
philosophers, but above all to
people who experience illness,
impairment, and bodily
alienation
I confess to being less enraptured
by phenomenology itself, as a body
of theory. Thankfully, Carel provides
a very helpful exegesis of the ideas of
Edmund Husserl, Maurice Merleau-
Ponty, and Martin Heidegger. One of
the problems of phenomenology is
that the word covers a multitude of
approaches. Carel includes a dense
chapter exploring the debate among
scholars of Heidegger as to what is
meant by Being towards-Death, and,
in particular, what Heidegger means by
deathnot as straightforward as one
might imagine.
Im also not quite sure about the
boundaries between illness and
impairment. After all, many illnesses
have consequences for functioning,
such as multiple sclerosis or muscular
dystrophy, for example. Carel is
excellent on what she calls the social
architecture of illnessthe interactions
with others who do not understand
what it is like to have physical
limitations. But although sociologists
have pointed to the social and
economic barriers that make life with
impairment or illness more difficult,
the wider context of employment
discrimination, benefit entitlements, Phenomenology of Illness
and housing policies is largely missing, Havi Carel. Oxford University
Press. Pp 272. US$5000.
from this volume, as is the emerging ISBN 9780199669653
philosophy of disability. For more on Life of Breath project
For Carel philosophy can help see https://lifeofbreath.org/
us understand illness but, equally,
illness can be a philosophical tool,
motivating reflection, by moving
beyond the idiosyncratic and personal
to a general and abstract exploration
of embodiment as a sense of meaning
and condition of possibility for the self.
Illness suspends us from the everyday
attitude to life. Patients bodies are
viewed as objects through the medical
gaze, scanning technologies, and
test results. But at the same time
patients live the subjective experience
of illness. They oscillate between
the objective and the subjective, the
active and the passive. In illness, time
and space are experienced differently.
Illness is a compulsive invitation to
philosophise, although that invitation
is not always taken up. This beautiful
and moving book is an example of
phronesispractical wisdom. Carel
talks to the medical profession, to
her fellow philosophers, but above
all to people who experience illness,
impairment, and bodily alienationwe
who hold passports in the kingdom of
the unwell.
Tom Shakespeare
tom.shakespeare@uea.ac.uk
I am Professor of Disability Research at Norwich
Medical School, University of East Anglia.