Illness as Deviance
“In Latin norma means ‘square’,
the carpenter’s square. Until the 1830’s the English word normal
meant standing at a right angle to the ground. During the 1840s it
came to mean conformity to a common type. In 1880s, in America it
came to mean the usual state or condition not only of things but of
people… [It] was first given a medical connotation around 1840 by
August Comte … During the last decade of the nineteenth century,
the norms and standards of the hospital became fundamental criteria
for diagnosis and therapy. For this to happen … it was sufficient
that disease as deviance from a clinical standard make medical
intervention legitimate… “
Ivan Illich, Medical
Nemesis, the Expropriation of Health
Though they may or may not think very
deeply about what is wrong with the social and economic system they
live in, most people who suffer from being stuck in poverty, poor
housing or boring, low-pay jobs would not think of asking what is
wrong with them.
Nor do people who suffer from the experience of war, floods or other
natural catastrophes, deaths in their family etc. Yet when it comes
to suffering experienced in the form of bodily symptoms of ‘illness’,
then, unless their condition is clearly related to their immediate
environment or living conditions (for example starvation, lack of
clean water, radioactive emissions etc.) the first question people
tend to ask themselves is ‘What’s wrong with ME?’
The question itself carries several
implications. Firstly, the word ‘wrong’ implies that something
abnormal and unnatural is going on in their bodies, i.e. a deviation
from some norm
of ‘healthy’ bodily functioning. Secondly, the question
implicitly asks for a ‘cause’ of the body’s deviant behaviour –
and usually seeks an answer in the form of some medically diagnosable
‘illness’ or ‘disease’. Indeed the sufferer might already be
asking themselves speculative diagnostic questions such as ‘Am I
getting a cold?’ or ‘Might I have cancer?’.
A third, even worse implication is
suggested by the little word ‘me’ – the implication of it being
that not just a person’s ‘mind’ or ‘body’ but they
themselves are ‘deviant’
in some way. The belief that illness is a form of deviant bodily
state or even deviant behaviour may be reinforced by feelings of
shame or anxiety around it – for example, shame or anxiety about
calling in sick and taking a day or more off work.
Such feelings are further reinforced if,
as was revealed in a recent documentary on working conditions and
regulations in Amazon warehouses – employees are actually given a
‘black point’ for simply taking half a day off work due to
illness – or even just feeling
tired at the end of a
gruelling 10- hour night shift – and thus not fulfilling their
pre-set performance targets. Worse still, the Amazon rule was ‘three
strikes’ (three black points) and you’re out – quite literally
out of a job – and that quite irrespective of whether your symptoms
(for example a bad or even chronically injured back) might actually
be due
to the excessive strain placed upon your body by the job itself (for
example from having to constantly push heavy trolleys). In the case
of Amazon, we must include also the mental stress of having the
maximum time in which you are expected to pick up another item for
the trolley literally counted
down in seconds on a hand-held
monitor carried by every employee).
This is but a particularly extreme
example of how the very phenomenon
that we call ‘illness’ is never itself brought into question. Is
a worker’s ‘illness’ merely their bad back, or some other
psychological stress or physical strain symptom? Is it enough to have
a doctor diagnose the patient’s symptoms (for example as tendonitis
or a damaged vertebra ) to know what’s ‘wrong’ – to know what
the ‘illness’ is? Or is what is really
‘wrong’ the fact that institutionalised biological medicine
limits the very phenomenon of illness to the patient’s body and
mind – failing to look for let alone ‘diagnose’ anything
fundamentally ‘wrong’, ‘ill’ or ‘sick’ in their life
world.
This narrow biomedical concept of
‘illness’ as a phenomenon is particularly obvious in the case of
so-called ‘mental illness’ – where a person may for example, be
medically labelled as suffering from a ‘psychiatric disorder’
called ‘depression’ – yet without taking into account any of
the countless entirely good and valid reasons
a person might have for feeling depressed, even severely or
‘clinically’ depressed (for example the actual or looming death
of a spouse, loss of a home or job etc.). More broadly still (and
though it seems almost a too blindingly obvious question to even ask,
though it rarely is asked)
what sort of medical ‘mindset’ is it that regards ‘depression’,
‘cancer’ and even ‘Post Traumatic Stress Disorder’ as
‘illnesses’ – but not exploitative wage-slavery
or war –
not even dropping atom bombs on whole populations or using
carcinogenic uranium tipped bullets? Similarly, what sort of medical
mindset is it that regards liver cirrhosis as an ‘illness’ –
but not the mass marketing of alcoholic drinks or a culture of
binge-drinking? The list of possible examples here is endless, yet
they all point to a wholly
artificial division between
the sickness of individuals and that of society as a whole and social
relationships in general – including the doctor-patient
relationship – a division maintained not just by medical
practitioners but all too often by their patients as well.
From the first question (‘What’s
wrong with me?’) comes another: ‘What can I do about it?’. This
second question too, carries many hidden implications and
presuppositions. One major presupposition is that if a person has
discomforting symptoms of any sort, then the natural and obvious
course of action is to seek to get
rid of them – and to do so
both as soon as possible and by any medical means available. The idea
that an illness may be a natural
expression or even a healthy
response to fundamentally unhealthy ways of living and relating, to
distressing life experiences – or to a fundamentally sick world –
does not even enter the medical mindset shared by most doctors and
patients alike. Instead it is as if the whole place of medicine in
society is simply to eradicate the symptoms of a sick society by
‘privatising’ them – reducing them to a personal
condition of individuals and
one that can be diagnosed and treated independently of their larger
social and relational context of emergence.
What Martin Buber said of so-called
‘mental illness’, namely that “sicknesses of the soul are
sicknesses of relation” can therefore just
as well be said of so-called
‘physical illnesses’ too – ‘sicknesses of the body’. Indeed
it may be argued that ‘sicknesses of the body’ are there
precisely to express and make us aware of ‘sicknesses of the soul’.
For the human body is not just a more or less well-functioning
biological machine but a living relational language of the human
being. And just as ‘body language’ constitutes the major
component of all human communication and relating, so also is ‘bodily
sensing’ (Gendlin) our most important way of staying aware of how
we are experiencing our lives and life world as a whole – being a
type of sensitive field
awareness of that world as
opposed to the more focussed awareness we apply to everyday
activities in it.
As Carlos Castaneda put it: “The body
is an awareness.” This is an
understanding central to the very essence of what we call ‘body’
– a word whose oldest etymological meaning is simply ‘to be
aware’ or ‘be awake’. Quite simply, the body itself, being
itself so intimately connected with the world around us, also is
aware of and knows
that world more deeply and intimately than the intellect alone. Yet
we are faced with medical mindset that, whilst it claims a huge
amount of intellectual knowledge about
the body, at the same time totally ignores
or devalues the body’s own
knowing –
that sensitive knowing awareness which the body most essentially is.
A second presupposition of the ‘What
can I do about it?’ question is (except in emergency situations or
where simple remedies suffice) the belief that anything
needs to be ‘done’ at all.
For more often than not, when patients present physicians with
symptoms, their principal motive – beside the basic infantile one
of wanting a parent figure who will ‘make it better’ – is
simply to seek acknowledgement or ‘registration’ of their
discomfort or suffering by another human being and – through the
official role of the doctor in society – by society at large. The
patient may also, consciously or unconsciously, be seeking someone
who will recognise the ways in which they feel not just ill-at-ease
with their bodies but ill-at-ease with their lives,
i.e. recognition of the existential or life dis-ease
that their body is communicating through their symptoms.
This is not the same thing as asking for
a medically recognised ‘disease’ to be diagnosed. For though this
is something which may be a comfort for some, for most patients
diagnostic testing and its results often constitutes a further step
on the road of separating their body from their being, their
‘illness’ from their life
– including their life history, relationships, circumstances and
conditions, dilemmas and ‘dis-ease’. Taking this step may also
lead to suggestions for medical treatment which only serve to
reinforce this separation of illness and life, and which often also
carry with them another presupposition latent in the question ‘What
can I do about it?’. This is the presupposition that if nothing is
done about it, ‘it’ can or will only get worse.
On one level, we all have a tendency to
respond to any form of bodily suffering in a basically infantile way
– feeling upset by it, wanting it to go away immediately or seeking
someone or something that will ‘make’ it go away – make us
‘better’ as soon as possible. We may also believe that if nothing
is done the symptoms will either persist for ever or get worse in
ways that are a further source of fear. This belief and the fear
associated with it is often actively intensified by physicians
(usually out of their own fear
of negligence in ignoring the possibility of some serious or even
life-threatening disease developing if what may
be its first signs are not
looked at more closely or its still harmless first stages not treated
promptly). Indeed we could go so far as to say that the mindset of
biological medicine is based on a fundamentally
paranoid relation to the human
body and bodily states. Thus the often amorphous sense of ‘not
feeling ourselves’ that is often taken as the first sign of
‘illness’ may already alienate us from our bodies – leading us
to experience them in a paranoid way as alien or persecutory bodies,
altering and threatening the usual bodily sense of self
we take for granted.
In today’s medicalised world however,
any suggestion that we might overcome this sense of alienation from
our bodies in the way that human beings used to do for millennia –
by accepting and
patiently bearing the
discomforts, pain or incapacity we are suffering
– is regarded as a dangerous form of defeatism in the on-going
medical ‘war’ against disease, i.e. against whatever genes, cells
or microorganisms are currently held by medical ‘science’ to be
the alien disease ‘entities’ responsible for that suffering. The
role of the physician then, is reduced to one of merely identifying
this alien entity as precisely as possible in medical terms, and then
medically exterminating or surgically excising it. Hence instead of
exercising the art of patience
in the face of suffering people become willing ‘patients’, often
colluding with physicians in a common war against the supposedly
alien entities inhabiting their bodies. The biological fact that
there are, all the time, millions
of times more bacteria than
cells in a ‘healthy’ human body (including pathogenic ones) is
quietly ignored – as are many proven medical and biological facts
that fly in the face of biological medicine.
The fact of the matter is also that in
industrialised societies billions of people – even if not
‘ill’ in medical terms – are already
unhealthily alienated from
their bodies. They are so simply by virtue of having to sell their
bodies’ physical and mental capacities to an employer – for them
to use or abuse at will for in the pursuit of commercial and
corporate profit. Yet instead of this fact – this ‘sickness of
relation’ – being taken as an illness in itself it is meekly
accepted as an unalterable economic ‘given’.
After all, we all have to ‘earn a
living’, even if we have no option but to do so through what Marx
described so well as “the alienation of labour” – a big part of
which was the alienation of the labourer from his or her own body.
The result is that ‘health’ as
such has increasingly come to
be defined as mere ‘fitness for work’, i.e. the capacity to
‘function’ economically and in this way conform to and sustain an
economic system based on wage-slavery.
That the human
body should rebel
against this type of
alienation and slavery through symptoms of ‘illness’ – even and
particularly if as human beings
we do not ourselves rebel – is surely a healthy
response (and that even and
particularly if it incapacitates or disables the individual’s
capacity to merely function economically as a ‘healthy’ corporate
wage-slave).
And yet the pseudo-religious
dogma and moralistic judgement that
illness implies something ‘wrong’ with the body – or even with
the person who is deemed ‘ill’ – stubbornly persists, thereby
providing an on-going justification for the increasing medicalisation
– and commercially highly lucrative medication
– of almost every form of human suffering. Thus despite the no less
commercialised proliferation of ‘alternative’ forms of medicine
the true alternative
to biological medicine finds almost no voice in our society. This is
the alternative of understanding the very phenomenon of ‘illness’
in a way that transcends the boundaries of the body, of seeking and
finding meaning
in illness rather than seeking medical cures for it. By this I mean
understanding what we call illness as something with an innately
healing function – not
something in need of cure or elimination but there to cure
us – to free us from
intrinsically unhealthy ways of thinking, relating, living and
‘making a living’. Hence the provocative title of my book –
‘The Illness is the Cure’.
One fundamental way in which each of us
can therefore begin to alter our whole understanding of and relation
to illness from this new and radical perspective is therefore
precisely not to
ask ourselves the sort of questions referred to at the beginning of
this essay- questions such as what is ‘wrong’ with us or with our
bodies. Instead we can ask ourselves what it is that our bodies are
telling us is wrong with our lives.
Similarly, instead of asking ourselves what we can ‘do’ to cure
our symptoms we can ask ourselves what our bodies themselves are
urging – or even forcing us – to start or stop doing in
and with those lives (by which
I do not mean things like stopping smoking or starting on the latest
health tips and fads).
It is the reduction of life
as such (Greek bios)
in all its dimensions to the life of the body, and the reduction too
of life’s own meaningful ‘speech’ (bios
logos) to a single science
called ‘biology’ that together constitute the most basic
falsehoods on which modern ‘biological’ medicine is built –
preying on our need for instant fixes for any form of suffering.
Therefore a second way of fundamentally
changing our relationship to illness is, like the Stoics and
Pyrrhronian skeptics of ancient Greece, to refuse to judge
any particular way of experiencing our body – and with it our minds
– as ‘better’ than any other. This means also breaking with the
conventional association of health with happiness.
For it might well be that by fully accepting a bodily state of
suffering associated with ‘illness’, not only do we not cease to
be capable of happiness, but might actually experience a new and
deeper state of ‘happiness’ or ‘well-being’ – one wholly
independent
of the presence or absence of ‘illness’ or suffering in our
lives.
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