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.”
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
2015
DEE BLACKIE
“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)
2015
DEE BLACKIE
2015
DEE BLACKIE
2015
DEE BLACKIE
2015
DEE BLACKIE
A universal aspect of human life
Reflexive
Medical
Social
Experiential
Activist
2015
Phenomeno
logical
DEE BLACKIE
Narrative
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.
2015
DEE BLACKIE
Different kinds of disability
AttentionDeficit/
Blindness
or Low
Vision
Hyperactivity
Brain
Injuries
Deaf/ Hardof-Hearing
Organise
thoughts
Cause &
effect
Problem
solving
Processing
info & word
retrieval
Integra-ting
skills
Social
interactions
Short-term
memory
Balance,
coordination
Communication
Speech
•
•
•
•
•
Learning
Disabilities
Medical
Disabilities
Physical
Disabilities
Psychiatric
Disabilities
Speech and
Language
Disabilities
Disorders
•
•
ADD
ADHD
•
•
•
Totally
blind
Legally
bling
Low Vision
•
•
•
•
Pervasive
Developmental
Disorders
•
•
•
•
Autism
Asperger's
Syndrome
Rett
Syndrome
Childhood
Disintegrative
disorder
(Hellers
Syndrome)
2015
•
•
•
•
•
•
•
•
Lip reading
Speech
Reading
Writing
Communication
Linguistic
cultural
group
Sign
language
•
•
•
•
•
•
•
•
•
•
•
Auditory
processing
disorder
Dyscalculia
Dysgraphia
Dyslexia
Language
processing
disorder
Non-verbal
learning
disabilities
Visual
Perceptual/
Visual
Motor
Deficit
ADHD
Dyspraxia
Executive
Functioning
Memory
•
•
•
•
•
•
•
•
•
•
•
•
Cancer
Chronic
Fatigue
Syndrome
Epilepsy/S
eizure
Disorder
Fibromyalgia
Lupus
Erythmatosis
Multiple
Sclerosis
Chemical
Dependency
Diabetes
Epstein
Barr virus
HIV + AIDS
Multiple
Chemical
Sensitivity
Renal
Disease
•
•
•
•
•
•
•
•
•
•
Spinal cord
injury
(para/quadriplegia),
Cerebral
palsy
Spinal
bifida,
Amputation
Muscular
dystrophy
Cardiac
conditions
Cystic
fibrosis
Paralysis
Polio/post
polio
Stroke.
•
•
•
•
•
•
•
•
Anxiety
Disorders
Mood
Disorders
Psychotic
Disorders
Eating
Disorders
Impulse
Control
Addiction
Disorders
Personality
Disorders
Obsessive
Compulsive
Disorders
Post
Traumatic
Stress
Disorders
•
•
•
•
•
•
Hearing
loss
Cerebral
palsy,
Learning
disabilities
Physical
conditions
Projection
Fluency
problems,
stuttering &
articulating
DEE BLACKIE
John Hopkins University
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
2015
DEE BLACKIE
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/)
2015
DEE BLACKIE
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-breedingground-aspergers-syndrome/
2015
DEE BLACKIE
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)
2015
DEE BLACKIE
Disability is relevant to a number of worlds
World of
Kinship & Family
Commercial
World
World of
Community
Medical World
World of
Religion
Scientific
World?
World of
Activism &
Social Change
Media
World
2015
DEE BLACKIE
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
2015
DEE BLACKIE
Universality of the Experience of Disability
•
No social category is exempt from the disabling experience:
RACE
GENDER
DISABILITY
Aging
Diagnosis
Remediation
Rarely exit
Challenges lifelong presumptions of stable identities and normativity
2015
DEE BLACKIE
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)
2015
DEE BLACKIE
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)
2015
DEE BLACKIE
…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
2015
DEE BLACKIE
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)
2015
DEE BLACKIE
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)
2015
DEE BLACKIE
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.
2015
DEE BLACKIE
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)
2015
DEE BLACKIE
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)
2015
DEE BLACKIE
Cultural Codes for Health & Wellbeing?
NATURAL
VITALITY/
VIRITLITY
FORTITUDE SAVOR LIFE
MOVEMENT
& ACTION
HARMONY
MEDITATION
POWER
SAVOR
LIFE
NB: HIV/Aids =
disease of
disempowerment
Power & Action vs Harmony & Savoring
2015
DEE BLACKIE
OBLIGATION
Principles of healing
Ghost
Reindeer People
Mongolia
2015
Gwi, Bessa, /Kunta, N!ae
San Bushmen
Namibia
Harold
Kuku Yalanji Healer
Daintree Rainforest
Australia
DEE BLACKIE
Vernon Benonie
Canyon de Chelly
Navajo Reservation
North America
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
2015
Fight for Rights
To gain
Resources
DEE BLACKIE
Disability
Diagnosed &
Medicalised
Fight for
Acceptance
De-medicalised
(lose resources)
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 science at Colorado State University
2015
DEE BLACKIE
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
2015
DEE BLACKIE
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)
2015
DEE BLACKIE
Disability and Life-Stage
•
Aging and growing old
– Alzheimer's disease
– Senility
– Dementia
2015
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)
DEE BLACKIE
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:
2015
DEE BLACKIE
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.
2015
DEE BLACKIE
Thank you
MAY 2015
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.