A World of Disability

1. http://www.brainpickings.org/2011/05/03/drawing-autism/ A World of Disability “Who are some artists that you like? None. I study road maps and atlases in detail and generally I scroll the full track of our trips on Google Earth.”

2. A World of Disability – 11 & 12 May 2015 This week introduces disability studies as a critical aspect of medical anthropology. We will explore disabilities from a number of different perspectives, including the social, activist, reflexive, experiential, narrative and phenomenological dimensions of living with particular impairments. • Fay Ginsburg and Rayna Rapp – Disability Worlds (2013) • RP. Shuttleworth & D. Kasnitz – Cultural Context of Disability (2006) Tutorial Assignment: Disability is a profoundly relational category, always already created as a distinction from cultural ideas of normality, shaped by social conditions that exclude full participation in a society of those considered atypical”. • Discuss this statement using examples from this weeks readings as well as your own personal experience of disability in your learning, family or social environment

3. “Disability is a profoundly relational category, shaped by social conditions that exclude full participation in society. What counts as impairment in different sociocultural settings is highly variable. Recently, new approaches by disability scholars and activists show that disability is not simply lodged in the body, but created by the social and material conditions that “dis-able” the full participation in society by those considered atypical.” (Ginsberg & Rapp, 2013 p4.1)

7. A universal aspect of human life Reflexive Medical Social Experiential Narrative Activist Phenomeno logical

8. What is a disability? (WHO) Disabilities is an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations. Disability is thus not just a health problem. It is a complex phenomenon, reflecting the interaction between features of a person’s body and features of the society in which he or she lives. Overcoming the difficulties faced by people with disabilities requires interventions to remove environmental and social barriers. People with disabilities have the same health needs as non-disabled people – for immunization, cancer screening etc. They also may experience a narrower margin of health, both because of poverty and social exclusion, and also because they may be vulnerable to secondary conditions, such as pressure sores or urinary tract infections. Evidence suggests that people with disabilities face barriers in accessing the health and rehabilitation services they need in many settings.

9. Different kinds of disability John Hopkins University

10. Statistics on Autism • About 1 in 68 children has been identified with autism spectrum disorder (ASD) according to estimates from CDC's Autism and Developmental Disabilities Monitoring (ADDM) Network (SA = 250 000). • ASD is reported to occur in all racial, ethnic, and socioeconomic groups. • ASD is almost 5 times more common among boys (1 in 42) than among girls (1 in 189). • Studies in Asia, Europe, and North America have identified individuals with ASD with an average of about 1%. A study in South Korea reported a prevalence of 2.6%. • About 1 in 6 children in the United States had a developmental disability in 2006-2008, ranging from mild disabilities such as speech and language impairments to serious developmental disabilities, such as intellectual disabilities, cerebral palsy, and autism. http://www.cdc.gov/ncbddd/autism/data.html

11. A rising panic! • In urban areas of South Korea, some families of children with developmental delays will go to great lengths to avoid a diagnosis of chapae, or autism. They think of it as a genetic mark of shame on the entire family, and a major obstacle to all of their children's chances of finding suitable spouses. (http://sfari.org/) • One in 88 American children has autism or one of its variants according to a new study, marking the highest-ever rate of prevalence and prompting calls for a stronger government response to the "national emergency". New figures from the Centre for Disease Control (CDC) found that rates of autism had leapt 23 per cent in two years, raising questions as to whether the disorder is actually becoming more prevalent or if increasingly sophisticated measuring techniques are pushing up the rates of diagnosis. (http://www.telegraph.co.uk/)

12. Asperger’s Syndrome in Silicon Valley • Researchers agree that genes play a crucial role in laying the neurological foundations of autism, including higher functioning autism, of which Asperger’s Syndrome is one type. Studies have shown that if one identical twin is autistic, there’s a 90 percent chance that the other twin will also have the disorder. If parents have had one autistic child, the risk of their second child being autistic rises from 1 in 500 to 1 in 20. After two children with the disorder, the odds are 1 in 3. • The 2001 Wired article suggested that the high incidence of Asperger’s Syndrome in Silicon Valley is due not just to the large number geeks working in the high tech industry but also because they are having children together and in doing so passing the predisposition to Asperger’s along. In effect, geeks are begetting geeks. http://www.kennethrobersonphd.com/silicon-valley-breeding-ground-aspergers-syndrome/

13. Medical Anthropology vs Own Discipline? • Anthropology is the study of humans, past and present. To understand the full sweep and complexity of cultures across all of human history, anthropology draws and builds upon knowledge from the social and biological sciences as well as the humanities and physical sciences. A central concern of anthropologists is the application of knowledge to the solution of human problems. (AAA) • Medical Anthropology is a subfield of anthropology that draws upon social, cultural, biological, and linguistic anthropology to better understand those factors which influence health and well being (broadly defined), the experience and distribution of illness, the prevention and treatment of sickness, healing processes, the social relations of therapy management, and the cultural importance and utilization of pluralistic medical systems. (SMA)

14. Disability is relevant to a number of worlds Commercial World World of Community World of Kinship & Family Medical World World of Religion Scientific World? World of Activism & Social Change Media World

15. The Disability Rights Movement • Disability as stigma. • Social model of disability - critique of medicalisation and hegemony in defining and categorising normative subjects: • No just lodged in the body. • Created in social and material conditions. • Dis-able full participation in society of certain bodies & minds. • Focusses on the negative interaction between persons with impairment and their social environment. • Relationship between embodied limitations and social discrimination. • Production, reproduction and transformation of social inequality. Late 20th Century aimed at improving lives and social inclusion and included social movements, eugenics, citizenship, state policy and human rights

16. Universality of the Experience of Disability • No social category is exempt from the disabling experience: DISABILITY RACE GENDER Aging Diagnosis Remediation Rarely exit Challenges lifelong presumptions of stable identities and normativity

17. Moral Relativism “The concept of the normal is properly a variant of the concept of the good. It is that which society has approved. A normal action is one which falls well within the limits of expected behaviour for a particular society. It’s variability among different peoples is essentially a function of the variability of behaviour patterns that different societies have created for themselves, and can never be wholly divorced from consideration of culturally institutionalised types of behaviour” (Benedict 2001 p. 87)

18. Classifying people with impairment/disability • WHO 1980 – any loss or abnormality of mental, physiological or anatomical function • Biomedical understanding of impairment – viewed as separable from social circumstances and implies diminishment or limitation of individual’s neuromusculoskeletal capacity or functional ability measured against a normative standard. • Disciplinary mechanisms of modern institutions (Foucault 1979): • Hierarchical observation • Normalising judgement • Classifying people (behaviour, body and cognitive functions) in terms of their relationship to a social norm (Douard 1995) Modern Western societies obsession with functional efficiency “Function becomes fetishized” (Shuttleworth & Kasnitz)

19. …children who [get] their upper teeth first; throughout my fieldwork area this was considered a very serious disability that would affect a person throughout life… Function los, which is an important determinant in our Western taxonomy, only played a minimal role. In actual fact it was not function loss, but the dryness of the affected part which determined the seriousness of the disability. Burk (1999) – Shona ward in Zimbabwe

20. Disability in Anthropology • The Cloak of Incompetence (1967) Robert Edgerton • Closure of asylums • Strategies deployed by those who learned how to ‘pass’ as normal • Homes, houses and communities of disabled • Opportunity House (Angrosino 1994) • Bethel House (Nakamura 2009) • Created communities of disabled in an unaccommodating world and their management strategies: • Impaired hearing (Becker 1980, Groce 1985) • Impaired sight (Gwaltney 1970, Deshen 1992) • Social consequence of difference (Joan Ablon): • Little People in America (1984), Living with Difference: Families with Dwarf Children (1988) and Brittle Bones, Stout Hearts and Minds (2010)

21. Auto-ethnography • First person experience: • Own experience (living with brain difference) • Parent of child with a disability (impact on concepts of motherhood/parenthood) • Reflexivity: experience of ethnographer with disability (sensitivity) • “Brain different people need to become their own most intense listeners, powerfully sensitive to what is happening inside their body, their brain…If and when its presence is diagnosed, LD still is an invisible condition. Its carriers do not move in wheelchairs or use other aids that can be seen. Their bodies present no recognisable signs of impairment or disability. Having an invisible impairment carries annoying disadvantages… People with LD manage to make some sort of adjustment to the world around them. It may not be the most effective or the most efficient solution to their particular problem(s), but most find a way to function on par with those around them. Accommodation is frequently accompanied by concealment. After all, we hear accusations of stubborn, obstinate and rose so often that passing as normal or even “faking: can come to be more important than getting help” (Raphael, Slovesh and Laclave p.159)

22. Disability around the world • Disability means different things around the world, in many cultures the category of disability is not even recognised. • Often due to the availability or lack of medical technology and the extent of medicalisation. • “For example, a condition such as epilepsy may be seen as a divine gift or a rare genetic condition understood as an ancestral curse.” (Whyte 1995, Fadiman 1998, Biehl 2005). • Others are hidden, silenced, integrated as labourers or forced to migrate. • NB intergenerational care.

23. Individualisation in the medicalisation of disability “While in the U.S. society an impairment is primarily seen as an individual affair and functionally limiting at the bodily or cognitive level, in many non-modern societies what is perceived to be the cause and/or consequence of an impairment may be dysfunctional social relations or the transgressing of social order. Whether or not the individual’s functioning is perceived as diminished, it is often the social relational functioning of the family and community, which are the sites of major concern.” (Shuttleworth & Kasnitz 2006)

24. Understanding and inclusion/exclusion? • Separation between disease and disability: • It is perceived as a disability or just an enduring disease? • Inclusion or exclusion from various cultural domains? • Impact of gender and roles in marriage? “Much depends the interplay of beliefs, social expectations, and economic imperatives of the particular society as to whether some human anomaly will be considered impairing and whether the person will experience social exclusion.” (Groce 1990)

25. Cultural Codes for Health & Wellbeing? NATURAL VITALITY/ VIRITLITY FORTITUDE SAVOR LIFE MOVEMENT & ACTION OBLIGATION HARMONY MEDITATION POWER SAVOR LIFE NB: HIV/Aids = disease of disempowerment Power & Action vs Harmony & Savoring

26. Principles of healing Vernon Benonie Canyon de Chelly Navajo Reservation North America Ghost Reindeer People Mongolia Gwi, Bessa, /Kunta, N!ae San Bushmen Namibia Harold Kuku Yalanji Healer Daintree Rainforest Australia

27. Disability or Minority Group? • Deafness & Deaf Culture • Disability or minority? “Dearness is a disability that is so unique, its very nature causes a culture a culture to emerge from it. Participation in this culture is voluntary”. d/Deaf activist Mark Drolsbaugh (2008) Disability Fight for Rights To gain Resources Disability Diagnosed & Medicalised Fight for Acceptance De-medicalised (lose resources)

28. Alternative Socialities • Sensory socialities • Autism – inability to interact socially. • Diversity of minds and cognitive difference. “I can remember the frustration of not being able to talk. I knew what I wanted to say, but I could not get the words out, so I would just scream.” “Autism is an important part of who I am. I wouldn’t want to change it because I love the logical way I think” Dr Temple Grandin Professor of animal scienceatColorado State University

29. Feminist Critique • Difference and dependence. • Caretaking – often mother’s responsibility • Democratic inclusion of diverse forms of personhood. • Denied sexual expression • Fear of reproduction • Segregation • Eugenic sterilisation

30. Created disability Until the 1990s, the orphanages of Romania were notorious for their harsh, overcrowded conditions. Those perceptions have been borne out in new research that finds growing up in such an environment can change the brain for good. Institutionalization in early childhood can alter a child's brain and behavior in the long run, the research finds. The study, conducted with children growing up in Romanian orphanages, reveals changes in the brain composition of kids who spent their first years in institutions versus those who were randomly assigned to foster care. (Live Science) Pregnant South African women are deliberately drinking large quantities of alcohol to harm their unborn babies in a bid to earn more welfare money, it has been claimed.  Expectant mothers living in the Eastern Cape, one of the poorest areas in South Africa, are bingeing on a 'moonshine' type drink which contains battery acid - with some drinking up to five and six bottles a day.  It has been reported they do it to claim a disability benefit from the government - using their disabled children as a source of income. (Mail on Line)

31. Disability and Life-Stage • Aging and growing old • Alzheimer's disease • Senility • Dementia An estimated 5.3 million Americans of all ages have Alzheimer's disease in 2015. Of these, an estimated 5.1 million are age 65 and older, and approximately 200,000 individuals are under age 65 (younger-onset Alzheimer's)

32. Disability & family formation • Genetic testing and stratification of disability in family formation – ‘quality controlled of children’. • Termination and the responsibility that is often placed on women. • Genetic counselling:

33. The New Normal – New Kinship Imaginary • Public story telling - Living with difference • More inclusive sense of citizenship for non-normal social actors • Visual activism, expanding social networks, enhanced sense of agency.

34. This astonishing 18ft drawing of the world’s most famous skyline was created by autistic artist Stephen Wiltshire after he spent just 20 minutes in a helicopter gazing at the panorama. The unbelievably intricate picture was drawn at Brooklyn’s prestigious Pratt Institute from Stephen’s memory, with details of every building sketched in to scale. Landmarks including the Empire State Building and the Chrysler Building can be seen towering above smaller buildings after just three days in his spellbinding creation. Thank you MAY 2015