Lecture 3: The journeys we make

Question 1

List all the positive things that having a diagnosis can mean for us as individuals when we are suffering with an illness.

Answer 1

Any of the following - an end to uncertainty over unexplained symptoms, hope for a cure, a plan of action in relation to treatment that gives our lives a purpose, permission to be unwell and to engage in lighter social responsibilities. Sometimes a diagnosis can ‘explain’ an embarrassing or discrediting symptom to allow us to tell the world it is ‘not our fault’.

Question 2

List some of the negative experiences for us of having a diagnosis for our illness

Answer 2

Some diagnoses can create stigma, some diagnoses offer us no hope of cure, if the diagnosis involves the discovery of a heritable illness then our own plight is shared by
members of our family should we choose to tell them. Deciding whether or not to tell others in this situation can be very difficult.

Question 3

What is Canguilhem (1991) definition of a disease?

Answer 3

Canguilhem (1991) – ‘disease is a departure from the norm
established by biomedical authority’ and to which the practice of medicine seeks to return the client

Question 4

What is Helman (2007) definition of illness?

Answer 4

From Helman (2007)
- illness can be thought of as a type of misfortune which brings on a subjective experience of physical and emotional changes which are generally confirmed by other people

Question 5

What is Canguilhem (1991) definition of health?

Answer 5

Canguilhem (1991)
- Being healthy means being not only normal in a given situation … “What characterises health is the possibility of transcending the norm which defines the momentary normal, the possibility of tolerating infractions of the habitual norm and instituting new norms in new situations.”

In simpler language – health is the capacity to become sick
and to recover, is contextually dependent and not at all about becoming ’normal’ –instead it is the capacity to continue living your life in a wide array of different circumstances which become normal to YOU

Question 6

What is the definition of contested diagnoses?

Answer 6

• Contested illnesses show the multi directional flow of
  interpretive work in ‘doing’ health and illness and it gets political – eg. you consider yourself ill but few agree you have a disease (ie ME)…or…
• Others think that you have a disease but you yourself consider you are just one more variation of how to be normal (ie successfully living with mental health issues or perhaps with D/deafness –there are just so many examples)

Question 7

What are the hierarchies of resort?

Answer 7

• Kleinman suggests at least 3 sectors of health care – lay, folk and professional with the professional being the tiny tip of the iceberg and the other 2 sectors below the surface of our attention most of the time (depending upon who ‘we’ are)
• The layers are porous and the categories are blurred, but people follow through them in a hierarchy of resort to seek relief from illness with professionals neither first nor last

Question 8

What is the language of distress?

Answer 8

(Helman 2007) - the “language of distress” acts as a bridge
between the subjective experiences of impaired well-being and social acknowledgment of them.

• Its expression is the resolution of a tight knot of physiological, psychological and socio-cultural meanings (including spiritual, political and environmental knowledges) ie ashen faces on the Sepik River, PNG versus Bogotá Colombia, Southland Farmers, the Italian ladies from Wollongong

Question 9

What is health care pluralism?

Answer 9

• Kleinman suggests that there are multiple sources of
  expertise/knowledge of health care (health care pluralism)

His very simple iceberg model is a good introduction - although too crude for the actual lived social complexity

Question 10

What is the definition of pilgrimage?

Answer 10

(Connecting to your reading by Pfister 2019)

• A definition of pilgrimage (Turner, 1969:4): “the process of going to a far place to understand a familiar place better”
• The concept of Pilgrimage – the parents undertook a journey in which they achieved self awareness and insight through a series of great hardships travelling from disillusionment with biomedical approaches to D/deafness to relief at finding the bilingual school approach

Question 11

What is Cassell (1976) definition of disease?

Answer 11

Cassell (1976) - disease is what we have after we have been to the doctor’s office and we are on our way back home.

Question 12

What is Sontag (1978:3) definition of illness?

Answer 12

Sontag (1978:3)
“Illness is the night-side of life, a more onerous
citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and the kingdom of the sick. Although we prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”

Question 13

What is Kleinman (1989) definition of illness?

Answer 13

From Kleinman (1989)
- to become temporarily demoralised with one’s world

Question 13

What is Cassell (1976) definition of illness?

Answer 13

Cassell (1976) - illness is what we feel when
we go to visit a doctor

Question 14

Why is distance for healthcare sometimes better?

Answer 14

• An actual rather than a metaphorical journey
• The allure of the culturally distant (Kamat, 2008) eg Lin & Ruth
• Seeking help from a healer can sometimes imply a moral stain, best kept quiet from the local community world of accusation, confession and retribution
• Neighbors are of great social support but can thus also be great enemies, to be the local healer’s client makes one vulnerable to them (they know your weaknesses)
• Just as free medicine is often deemed worthless, so treatment undertaken without the travail of a pilgrimage is often regarded as ineffective
• People also travel for high tech biomedicine for cheaper
  treatment, kinder older style care (ie from north to south for how medicine ‘used to be’)