brainpickings/2011/05/03/drawing-autism/

1. http://www.brainpickings.org/2011/05/03/drawing-autism/ “The lived experience of learning disabilities and developmental disorders”Dee Blackie - PhD Proposal Felix: Imaginary City Map, Age 11 “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. Deirdre’s Remedial Assessment 1981

3. Isabeau’s Remedial Assessment - 2015

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

5. 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.

6. “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. Disability is relevant to a number of worlds Activism & Social Change Commerce Community Medicine Religion Media Scientific World? Kinship & Family Age

8. In my research I would like to…. • Examine the day to day lived experience of learning disabilities and developmental disorders, particularly ‘Specific Learning Disabilities’, ‘High Functioning Autism Spectrum Disorders’ and related ‘Speech and Language Impairments’. • Amongst young learners entering the junior primary phase of education from age of 10 to 14 years, or grade 4 to grade 7. • My focus will be primarily on children diagnosed with specific learning disabilities, however, many children are often given a range of diagnoses. For children who are also considered to be on the Autism Spectrum, I will ensure that they are considered to have ‘High Functioning Autism’ (HFA) or ‘Asperger’s Syndrome’ (AS) to ensure that they are able to communicate. • My aim is to understand the lived experience of a child diagnosed as disabled from a number of perspectives. These will include their own personal experience of their world, the experience that they have within their family environment and finally the perspective of their remedial and educational therapists and teachers.

9. Research Question What is the lived experience of a child diagnosed with a ‘learning disability’ or ‘developmental disorder’ and how does this impact on the way they see themselves and find a place for themselves in the world? • How does a child with a learning disability or developmental disorder experience his or her world, physically, emotionally and socially? • How do they understand and experience their diagnosis and what does it mean to them? (only be explored if aware/familiar with diagnosis.) • What strategies do they employ to assist them in coping with the difficulties they encounter in their world? • How do they engage and communicate with other people who are assisting them in coping with the difficulties that they encounter? • What is the impact of their diagnosis on their friendships, family life and the structure of these? • What kind of future do they dream for themselves given their diagnosis? • How does their lived experience of their world differ from their internal perceptions of themselves?

10. How do families make meaning of dyslexia in middle class Johannesburg?

11. Disability in South Africa – UNICEF 2012 • 2.1 million children are classified disabled in SA (11.2% of population) • Impact of high levels of poverty, neglect and abuse. • Less access to attend school and high levels of illness/poor health. • Majority not receiving rehabilitation support (especially rural areas). • Just under 30% of children in CYCC’s are disabled. • More prone to abuse and neglect and less access to justice system. • No standard assessment tool. “Children who participated in the focus group discussions that formed part of the study reported that people’s negative attitude towards them was one of the most difficult things for them to deal with. Their greatest dislikes were being laughed at, being called derogatory names and being teased about their disabilities.” (DSD et al. 2012 p 9 – 17)

12. Literature Review Anthropology Of Childhood Biosociality Historical View Divergent Cultures Social Model of Disability Disability Studies Deviance Liminality Stigma Medicalisation Diagnosis Assemblage

13. Anthropology of Childhood • Plurality of childhood. • Different views on childhood and childrearing around the world. • Children are not recipients of adult culture. • Children are active participants in the complex network of adults and individuals that influence their world. • We need an anthropology which “acknowledges and accounts for both childhood in culture and culture in childhood” (Sean Jones 1993:6).

14. Historical View on Disability Care & Humanity Religious Institutions 1900’s Social Menace Eugenics/Exclusion 1800’s Switzerland Created Communities Colonies, Schools, Villages Community Integration 1960’s Disability Rights Movement

15. Divergent Cultures “Besa rarely spoke, and when he did, it tended to be in snatches of song, riddle, rhyme. Occasionally he would say something fully lucid, fully coherent, but usually not. Often he would laugh, flap his hands, dance a few jigging steps as if to music in his own head. In our culture they’d have chucked him into the funny farm years ago. Yet here, in his culture, a culture where no human resources could afford to be wasted, he was a valued shaman, with a wife, children, grandchildren, and a successful career. Was he autistic? It seemed so. Yet in his culture such a condition – one foot seemingly in the spirit world, one foot seemingly in our own – was regarded as a job qualification.” (Isaakson 2014:109) Autism like all disorders, does not exist outside of culture. It is culture that sees something as abnormal or wrong, names it, and does something about it, and all cultures respond to illness differently” (Grinker 2007:12)

16. Medicalisation – To make medical Defined in medical terms “Bio Power” (Foucault 1979) Described using medical language Understood through a medical framework Treated with medical intervention Endorsed by health authorities “Function has becomes fetishized” (Shuttleworth & Kasnitz 2006)

17. Deviance. Liminality. Stigma. STIGMA DEVIANCE LIMINALITY Loss or social roles & status Socially identified as disabled or different Adverse reaction by others in social environment A discrediting attribute, and undesired differentness from social expectations (Goffman 1963)

18. Social Model of Disability BIOMEDICAL MODEL? SOCIAL MODEL? How the social organisation of a person’s daily life shapes their disability and impacts on their sense of personhood (Ginsburg & Rapp 2013)

19. New Normal - Biosociality • “New Kinship Imaginary” • Public story telling - Living with difference – Inclusive Citizenship • Visual activism, expanding social networks, enhanced sense of agency. • Formation of social relationships and production of identity based on genetic or biological conditions – shared identity/collectiveness

20. Method – Exploring the ‘Lived Experience’ “The world is not what I think, but what I live through” (Merleau-Ponty 1945) PHENOMENOLOGY EMBODIED MIND FAMILY LIFE HISTORIES EXPERT INTERVIEWS & OBSERVATION PERSONAL BIOGRAPHIES

21. Assemblage MEDICALISTATION Body Politic Bio Power SOCIAL MODEL Cultural constructions of the body Institution-alised types of behaviour PHENOMENOLOGY Social Productivity Remediation Regulation Discipline Emotions Body Image Memories Int/Ext Perceptions Thoughts/ Actions Identity construction Sensory Experience Functionality/ Somatisation Embodiment Labelling Theory Diagnosis “Lived experience of body self” Social Suffering Activism Medication Education MINDFUL BODY* * Scheper-Hughes & Lock 1987)

22. Ethics Code of Ethics For Research on Human Subjects & ASNA Children Assent/Consent Diagnosis awareness Disabilities High Functioning Inclusion/Exclusion Distress Protocol Parent/Researcher Auto ethnography Meta approach Bias/Objectivity “A new emancipatory paradigm” where researcher places their knowledge and skills at the disposal of their research subjects to tell their story (Oliver 1992)

23. Why? “At the University of South Florida our mission from the beginning was to create a program focused on applied anthropology. Our intention was to train students to make contributions first and foremost towards solutions to major social problems and only secondarily to those bearing on theoretical and methodological questions within the discipline.” Michael V. Agrosino 1998

24. Astonishing 18ft drawing of the world’s most famous skyline was created by autistic artist Stephen Wiltshire after 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