Some more advanced theoretical concepts and applications of social control, power, illness meanings, and sick role issues in film, Lorenzo’s Oil

Final discussion notes- September 22, 1999

llness meanings: the term ‘sickness’ (Kleinman) as abstraction, given meaning via macro-social forces. Consider ALD as an abstraction: affects young boys, usually under age of 10, first born, who get it via mom’s gene. In this sense, ALD is sickness. Consider how it is a) a disease and b) an illness

Cultural values through institutions – cast blame away from the system and onto the individual. In the case of the school, hospital, and clinic, the trouble is viewed as originating at home, never in their own institution. Mother asks, "Why do you assume there is trouble at home?" and the institutional response is always, "because everything is fine here". This is reductionist thinking at the institutional level.

Power of labels: medical language (language as part of culture): all part of all medical and educational personnel: disability and special education teachers – normalcy in the school environment. Tests all try to pinpoint the origin of trouble, again from the medical model and can’t be found: not attention deficit based on school/medical tests: not endless repetition of tasks, not neurological, or a hearing problem. Biomedical/reductionist approach the response is always, "By all tests this is a perfectly normal child."

Certainty and uncertainty of medicine: Think of the initial contact of parents in clinic with regard to diagnosis of ALD, "Are you (physicians) sure, medicine knows so little these days." Use of language- the diagnostic clinical sense, which results in glazed over looks from parents- what can you tell me to make sense of why this is happening. Note: disease is fatal and the clinical character of no hope- is readily obvious.

Individual attributes- either high SES, high level education/occupation: self education: journal to begin to make sense of Lorenzo’s world of ALD- go to source of articles and library

Medicalization and depersonalization: teaching scene in hospital: "We thank Lorenzo for what he is doing" which is a live case study for teaching students. Note clinical jargon in referring to Lorenzo and speaking to him. Consider Lorenzo’s response of "I don’t like the way you are talking"; dehumanizing and medicalization of care.

Life-world; subjective perception of illness versus normalcy: living in life world. Lorenzo is unable to eat pasta with utensils and uses hands- so does his mother. Gendered notion of how disease is acquired- through the mother; tainted blood; tainted genes- guilt and grief, individualization of blame. [Dr.- it’s not your fault,- yet no understanding of how suffering takes toll on mother]

Life world and conflicting value systems (again, subset of culture): ALD Parent Conference: Family comes together to help parents deal with illness- in their social worlds: marriage relationship; sexual contact, future children, stress and toll on family. Whose interests does parent group serve? What is the connection with clinical medicine- non-questioning of authority, protocol, and submission? Remark- children in the service of science or science in the service of children? WHY THIS LINKAGE- what are benefits for each party?

Illnesses from the life world perspective- approach it ‘like another country to command all aspects of disease’. Lorenzo’s family is now moving from lay conceptions of illness to medical model- WHY [need to get science involved and take on appropriate responsibility] Information is power, move to NIH.

Literature key: fat manipulation- finds one piece of data among mass of thousands. Inkling of how science progresses- many experts in isolation- what is the reason for collaboration? Funds an issue- if raised by family, then must be included in discussions. First POINT of power displacement- you are not physicians but we will permit you to participate.

Infrastructure: extract C24C26 from oil is a chemical process- with need for $$ and potential market- no merits, no investment of time

Treatment-

Objectivity/subjectivity- the meaning of a 15% drop; what happens when it levels off? Consider the experience of parents vs. doctor: Physicians see it as normal side affect, whereas parents see it as a ‘true event’ and are exuberant. Think of how this changes when the level stabilizes.

Professional power as moral authority: inform others of potential of therapy- who lends credibility- ALD parent group, yet will not comply. Issue of agendas:

	· Knowledge as information- to inform
	· Knowledge as power – to empower patient and upset social conformity