Many groups can be difficult to locate in healthcare or slip between different parts of the system. This paper is about visuailsing absent groups for better care and interventions.

1. Visualising Absent Groups in Healthcare:
The Case of Diversity and Disability in Australia
M R H A M I S H RO B E RTS O N
M R N I C K N I C H O L A S
M S M A R I A K AT R I V ES I S
A / P RO F ES S O R J O A N N E T R AVAG L I A

2. Space and Place in Healthcare
Vulnerability is linked to location – vulnerability factors and hazard events are
spatially patterned
Location can include broader context and circumstances (spatial extension
and scalar factors)
Scale is made explicit in knowledge production about vulnerabilities in spatial
science
Spatial science can accommodate quantitative and qualitative perspectives
and data eg. cognitive mapping
Implications for healthcare are substantial and fit within an expanded and
expanding scientific paradigm ie. an emergent disciplinary field

3. Forms of vulnerability Types
Bio-genetic vulnerability Demographic profiles and factors including age, individual health status, genetic
predisposition
Psycho-social vulnerability Location, social and psychological factors, including presence of carers and/or family
and friends, sexuality, disability, symbolic capital
Epidemiological vulnerability Groups and populations, both genetic and environmental illnesses and conditions
Socio-economic vulnerability Social, economic, cultural/religious, social and economic capital
Spatio-temporal vulnerability Time, space, physical transitions, environmental
Inter-personal vulnerability Relationship between patient and practitioner, "difficult/problem clients", "non-
compliant" clients
Cultural vulnerability Language, literacy, cultural and linguistic capital
Practice vulnerability Knowledge, skills, attitudes, stance of clinicians
Team vulnerability Communication, collaboration, peer relationships and pressures
Structural vulnerability Systemic, organisational, resources, media and public opinion
Organisational vulnerability Organisational, team, professional and locational culture and relationships
Environmental vulnerability ‘Natural’ disasters coupled with locational disadvantage, availablility and timeliness
of rescue and clean up services
Travaglia (2009)

4. Why making vulnerable (absent) groups visible (in all senses) matters
There is a long and wide history of ignoring the vulnerability of specific populations in health and
social care
• Sterilization of Indigenous peoples and people with disabilities without their consent (until the
…)
• Racist history of highly regarded organisations (The Racial Hygiene Association is now …)
• ‘Acquisition’ of bodies and body parts for study/display without permission
• Medical experimentation on virtually all vulnerable groups
• The involvement of health practitioners in state sanctioned experimentation and torture
• In research there is a systematic lack of study of non ‘standard’ patients (including women,
people from immigrant backgrounds and ‘minority’ backgrounds)
• WEIRD (western, educated, industrialized, rich, and democratic) participants predominate in social
sciences – skewed perspective on gold standard research (concern for evidence based policy and
practice) while at the same time there is an increasing ‘use’ of people in developing countries for
riskier medical and pharmaceutical trials

5. Six biases against patients in EBM
(Greenhalgh et al, 2015)
1. Most published research had minimal patient input (the available menu of evidence-based choices reflects a
biomedical framing and omits options that might be more acceptable and effective)
2. EBM’s hierarchy of evidence tends to devalue the patient or carer experience (the patient is effectively
‘regressed to the mean’ and offered the option(s) that the average patient would benefit most from)
3. EBM conflates patient-centredness with use of shared decision-making tools (humanistic aspects of the
consultation (empathy, compassion, the therapeutic alliance) are devalued and may be overlooked)
4. Power imbalances may suppress the patient’s voice (advice that is given, and management plans that are
‘agreed’, may be ignored (but may be inappropriate anyway since they are based on a partial picture)
5. EBM over-emphasises the clinical consultation (clinicians and researchers focus on ‘interventions’ that they
can deliver instead of considering how they can support models of care in which they are no longer central)
6. EBM is concerned mainly with people who seek (and can access) care (a ‘hidden denominator’ of hardest-to-
reach sub-populations may remain undiscovered, hence EBM may appear to have solved more problems than
it actually has)
Greenhalgh T, Snow R, Ryan S, et al. Six 'biases' against patients and carers in evidence-based medicine. BMC Medicine 2015;13(1):200.

6. Social Policy and Social Order
• Not everything is seen as a “problem” (eg men’s versus women’s heart
disease)
• Not all “problems” are seen as negative (ie normalized absence,
pathologised presence)
• Not all “problems” are seen worthy of a response (eg which incidents spark
public inquiries)
• These are ontological, epistemological and metaphysical (ethical) issues

7. This lack of visibility can be understood
using the following equation
Normalised absence
Pathologised presence
Normalised presence
Ann Phoenix
Woollett A, Phoenix A, Lloyd E, editors. Motherhood: Meanings, practices and ideologies. London: Sage, 1991.

8. Normalised absence
• Cultural construction of institutions
• Differential power relations
• Unrecognized historical and continuing institutionalized, cultural and individual
discrimination
• Toleration of systemic absence of knowledge (the “too hard” “too soon” “too late” “too
costly” basket)
• Hidden queuing (ie lack of effective communication or marketing of publicly funded
services)

9. This includes
Uncritical and uncontested theories of culture
• It is powerful because it is “hidden” in everyday assumptions (eg … Who pays for
our healthcare? Who needs interpreters?) and language (eg bed blockers)
• Cultures have been presented VERY BADLY – simplistic definitions, checklists,
heuristics, outdated representations, dominant or simplistic points of view
• Easier to ignore underlying systemic issues
• Allows (some) practitioners to claim ‘too many cultures, too much information’
to learn
• Fosters dependency (or denial) on ‘specialised’ staff, diversity “champions” or
those who share some cultural traits

10. Pathologised presence
• Continuation of what passes for pseudo-anthropology (“Asians are
humble”)
• Or continued focus on lowest common denominator (eg food as the most
pressing issue for community, and therefore the most appropriate indicator
of service ‘quality’)
• Diversity still constructed as ‘otherness’
• Focus on ‘culture’ alone can lead to locating the ‘problem’ in client
• Focus on ‘culture’ as only, or key variable can negate other differences,
concerns and/or similarities between clients and practitioners

11. What this looks like in practice for people
with disabilities
• Poorer access to all types and levels of health care;
• Inappropriate environmental and design of equipment and treatment spaces and services (such
as the height of examination beds, accessibility of preventative healthcare caravans);
• Limited clinician inexperience and lack of training in diagnosing and working with PWDs,
• ‘Hyper-focus’ on the disability rather than the individual and their other conditions or concerns;
• ‘Diagnostic overshadowing’ where symptoms are thought to be due to the person’s disability
rather than an new or unrelated condition;
• Increased probability overall that health conditions to be misdiagnosed or untreated;
• Patient difficulties in expressing pain;
• Lower levels of participation in health care screening;
• Lower levels of general or health literacy on the part of patients;
• Poor or inadequate communication on the part of health care providers;
• Lack of recognition of the concerns of patients and family members.
Based on the work of Professor Lisa Iezzoni

12. “Normalised” presence
Perpetual liminality of vulnerable groups - Mick Gooda, Australian Human
Rights Commission's Aboriginal and Torres Strait Islander Social Justice
Commissioner, last week:
“… why are our mob always subject, to these trials, pilot programs, etc?”

13. “Normalised” presence
• Privileged representations
• Ethnicity as historically bound, frozen culture
• Structurally silo-ed identities and the denial of emergent and or contested
cultural forms within and across communities and identities
(Deaf/Albania/Muslim/Gay)
• Unquestioned ministerium of “representatives” (one size fits all)
• Translation and access as the indicators of equity: ignoring equality of
utilization, safety, quality and outcomes
• Acceptance of simplistic, decontextualized representations

14. Social Structure is Spatially Ordered
• Space is a priori in our world and, consequently, often unexamined
• Yet our social structures are built in bricks and mortar
• The hierarchical position of social groups can be seen in the structure of our towns and
cities
• The health, ill-health and disabilities of specific groups are usually spatially correlated e.g.
rental accommodation and mental illness, homelessness, public housing blocks etc
• Invisible or uncommented groups are still physically present even when notionally absent –
strategies of control and marginalization
• Social policy has always involved spatial strategies – especially concentration or dispersal
e.g. in-relief versus out-relief

15. The future is already here - it’s just not very evenly distributed
(Olchinsky)
Visualising absent groups

16. Example 1: Social Inequalities from Space: Chicago and Rio
Tim De Chant at http://persquaremile.com/2012/05/24/income-inequality-seen-from-space/

17. http://morgarruya.blogspot.com.au/2011/07/disparity-between-rich-and-poor-in-rio.html

18. Example 2: can you spot the pattern in these
patient safety inquiries?
The Ely Hospital, Wales (1967) - long stay patients, elderly
Banstead Hospital, Cowley Road Hospital, Friern Hospital, St. James's Hospital,
Storthes Hall Hospital, St. Lawrence's Hospital, Springfield Hospital, UK (1968) –
elderly
Normansfield Hospital, Middlesex, UK (1978) people with learning disabilities
Inquiries into the circumstances of the death of various children and others and
the first Ashworth Inquiry Ashworth, UK (1985-96) – children
Stanley Road Hospital, Wakefield, UK (1986) – elderly patients
Cervical screening services, Cartwright Inquiry, NZ (1987 – 1988) – women
Chelmsford Royal Commission, NSW (1990) – psychiatric patients
Ashworth Special Hospital Inquiry, UK (1999) - criminal psychiatric patients
Rodney Ledward, UK (1999) – women
Grantham and Kesteven Hospital, Allitt - Clothier Report (1992, 1994) - children
Winnipeg Health Services Centre, Canada (1995 – 1998) – children
Cervical screening services at Kent and Canterbury Hospitals Trust - Wells
Report, UK (1997) – women
Royal Liverpool Children’s Inquiry (Alder Hey – Ashton report), UK (2000) –
children
King Edward Memorial Hospital, WA (2000 – 2001) – women
Bristol Royal Infirmary, Kennedy Report, UK (2001) – children
The Victoria Climbié Inquiry, UK (2001) – child
RMH, Victoria (2002) - the elderly
Southland DHB, NZ (2001-2002)- psychiatric patient
Three Inquiries: The Kerr/Haslam, Ayling, Neale, Inquiries (2003-2004) –
psychiatric patients, women
Camden and Campbelltown Hospitals, NSW (2002-2003)– locational
disadvantage, lower SES, people from NESB
Shipman, UK (2005) - elderly women, isolated individuals
Healthcare Commission, Clostridium difficile (Stoke Mandeville, Maidstone and
Tumbridge Wells), UK (2006)
Bundaberg, Patel Inquiries, Queensland (2006) – locational disadvantage, lower
SES, Aboriginal and Torres Strait Islander patients
E.coli Inquiry, South Wales (2006) – child
Garling Inquiry Reeves, NSW (2008) – women;
Garling Inquiry (acute healthcare), NSW (2008)
Mid-Staffordshire Hospital, UK (2010,2013) – ED, elderly, confused, dying
patients
Bacchus Marsh, Victoria (2015) – women, stillbirths, newborns

19. Disability by Age and Sex 2009 and 2012 ABS DAC Surveys
0
10
20
30
40
50
60
70
80
90
100
0–4 5–14 15–24 25–34 35–44 45–54 55–59 60–64 65–69 70–74 75–79 80–84 85–89 90+
2009
2012

20. State and Territory Variations

21. Centre for Disability Research and Policy. Report of Audit of Disability Research in Australia. Lidcombe: Centre for Disability Research and Policy, Faculty of Health Sciences, University of Sydney, 2014

22. Centre for Disability Research and Policy. Report of Audit of Disability Research in Australia. Lidcombe: Centre for Disability Research and Policy, Faculty of Health Sciences, University of Sydney, 2014

23. Centre for Disability Research and Policy. Report of Audit of Disability Research in Australia. Lidcombe: Centre for Disability Research and Policy, Faculty of Health Sciences, University of Sydney, 2014

24. Living in slushy times
Australia’s disability sector is dysfunctional, and transforming it is
complicated, arduous and stressful with the National Disability
Insurance Scheme currently "immersed in problem-solving",
according to a new sector report.
This is already having implications for the health sector
http://www.probonoaustralia.com.au/news/2014/12/%E2%80%98stressful%E2%80%99-state-disability-sector-report#sthash.JbuJECXH.dpuf

25. Unequal Progress and Ineqaulities

26. Geographies of Disability

27. Total Disability in Metro Sydney

28. Total Disability by People Aged 75+

29. By Country of Birth: Italy

30. By Country of Birth: Vietnam

31. Conclusion
- disability is one of many categories of person that is often absent from the research and policy
evidence
- diversity characteristics are frequently reductive and reified as deterministic (it’s because they
are…)
- being uncounted, discounted or removed from counting processes enhances existing
inequalities (change and progress can exaggerate inequalities)
- past and present inequalities are inherently spatial in nature because social processes have
spatial effects
- spatial science can improve this scenario moving forward (e.g. under NDIS)
- social policy and social care strategies need to be spatially enabled