Supporting Autistic Rights Considerations for Clinicians, Researchers & Caregivers Estée Klar, PhD...
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Transcript of Supporting Autistic Rights Considerations for Clinicians, Researchers & Caregivers Estée Klar, PhD...
Supporting Autistic Rights
Considerations for Clinicians, Researchers & Caregivers
Estée Klar, PhD Candidate
Critical Disability Studies, Department of Health Policy & Management, York University, Toronto
www.esteeklar.com
This Presentation
Assumes that access to communication accommodation is a right
This implies supported communication
Briefly looks at several Canadian legal cases that implicate human support as a right
Reflects on an emancipatory role of people in the helping industries
Looks at rights monitoring and how we can use the tools “on the ground”
Considers the history of disability in re-conceptualizing support and the history of knowledge
Uses affect and phenomenology to reconsider embodied autistic knowledge – ways of knowing
Promotes the principle of substantive equality
4 Parts
The purpose of proof
Rights and monitoring
History of the idea of autism
Support
Premise:
Remediation before the right to inclusion
“best interests” to protect the autistic person from him or herself – protection of society
Science and society bases it’s studies and therapies from proving and rehabilitating deviance.
Autistic people have to prove and “perform” normality before real inclusion and
participation in society
Why are “autistic” rights important?
Autistic people are not accepted in school
Autistic people do not have equal access to employment
Autistic people are not well accommodated
Autistic people spend most of their lives proving their competence or intelligence
Autistic people spend most of their lives in therapy and rehabilitation
Autistic people are subject to questionable methods, drugs and therapies in order to become “less autistic”
Autistic people are mostly segregated from society
Dialogical Loop
Our conception of autism is contained and identity is created in response to medical model of disability
DXResponse
to DX
What is the purpose of proof?“I know each leaf has a value and a meaning to the life of itself so our mission is to prove it” (Higashida, Wretches & Jabberers)
“I knew very early on in life that if you happen to be born with autism, you will need to give plenty of proofs to doctors, psychologists, teachers, therapists, disbelieving uncles and neighbors, and who knows who else?” (Mukhopadyhay, 2008, 157).
“Perfect movements…a learned handshake…And a gut full of despair and aloneness..In a world that applauds the ‘appear’…At the expense of the self” (Williams, 2003, 9).
Some other (positive) purposes of PROOF
To be valued
To be included
To work
To be loved
To survive
To be supported
To be accepted
To be considered a valid self-advocate
POWER
Some of the most disabled and incompetent in society
Erratic, violent, behavioural, infantile, criminal, unable to complete tasks…
The role of the rehabilitation industry under the medical model “the best interests of the client”
This usually means that the best interests serve to protect society from the autistic person (criminalized, fear)
Decisions regarding autistic people’s lives are largely made by non-autistic guardians, researchers, doctors, clinicians
Autistic people are rarely consulted in decision-making about their lives – considered “too hard” by teachers and therapists to accommodate
The power of decisions for “incompetent persons” is left to those in the rehab and medical professions
ONTARIO CONSENT & CAPACITY BOARD
What we need to consider when doing disability rights
The History of Disability and how we have come to conceptualize and “treat” it – (Gould/Foucault/Goffman....mad-people’s history, autobiography, history of behavioural and psychiatry…)
The Medical Model and Social Model of Disability
The Concept of Rights
How we can implement these rights in everyday practice in our interactions
Economic Explanations for exclusion and discrimination
What Are Rights?
The rights of disabled people have only recently found themselves in instruments
such as: UN Convention on the Rights of Persons with Disabilities
The Canadian Charter of Rights and Freedoms (1982)
Canadian Human Rights Act - “duty to accommodate”
American Convention on Human Rights (ACHR-PSS)
Convention on the Rights of the Child (CRC)
Inter-American Convention on the Elimination of all Forms of Discrimination
International Covenant on Civil and Political Rights (UN Doc)
International Covenant on Economic, Social and Cultural Rights (UN Doc.)…
Equality
"Equality is a right guaranteed to all Canadian citizens. The values inherent in the concept of equality include self-determination, autonomy, dignity, respect, integration, participation and independent living.“ - In Unison: A Canadian Approach to Disability Issues
Why the Universal Declaration of Human Rights? - UN Convention:
The rights enumerated in the Universal Declaration of Human Rights, in a perfect world, would be enough to protect everyone. But in practice certain groups, such as women, children and refugees have fared far worse than other groups and international conventions are in place to protect and promote the human rights of these groups. Similarly, the 650 million people in the world living with disabilities—about 10 per cent of the world’s population—lack the opportunities of the mainstream population. They encounter a myriad of physical and social obstacles that:
Prevent them from receiving an education;
Prevent them from getting jobs, even when they are well qualified;
Prevent them from accessing information;
Prevent them from obtaining proper health care;
Prevent them from getting around;
Prevent them from “fitting in” and being accepted.
Rights are declared but…
Rights become interpreted by the law – instruments act as preconditions/guidelines
In Canada, 90% of Human Rights Commission claims are by people with disabilities
Examples: Auton Vs. British Columbia
Moore Vs. British Columbia
Jaffer Vs. York University
Shift in Monitoring
Traditional Monitoring
SurveysWelfare
MedicalSocial
TreatmentProtection
Human Rights Monitoring
Dignity of Scrutinize
Person in the State’s
All Spheres Responsibilities
Of Life in protecting
and promoting
these rights for
all citizens with-
out exclusion or
discrimination
Monitoring at DPRI includes
Monitoring at individual level and
Monitoring in teams of people with disabilities
Why is this important for clinicians and care-givers?
Embedded Conceptions
a mythical belief regarding independence
Suspicion about support (such as supported communication as “hoax” – see Jaffer vs. York University, FC)
Autistics are not deserving (of accommodations – not worthy because they can’t contribute to the market economy)
Autistic bodies are erratic/non-compliant and can’t fit within an expectation of the good working body
Somatic knowledge is not valued knowledge – who gets to produce knowledge? (we often turn this into therapeutic “sensory integration” – that autistic people are disassociated from reality… and create deviance)
There is a discursive understanding of supported living and decision making – “person-centered planning” as a legal smokescreen
The Service System
Medial Model – system of protection & charity
OR, cure/recovery
Not social change
How has disability been conceptualized in history?
Pre Enlightenment – Religion
Enlightenment – Science
From Darwin to the Bell Curve
Only empirical evidence, objective fact, is true.
The FACTS
“Now, what I want is Facts. Teach these boys and girls nothing but Facts. Facts alone are wanted in life. Plant nothing else, and root out everything else. You can only form the minds of reasoning animals upon Facts; nothing else will ever be of any service to them.”
― Charles Dickens, Hard Times
The Birth of Rehabilitation
- Pinel’s Salpêtriere, and the birth of the asylum – was seen as a positive reform for imbeciles/insane and criminal
- Dr. Itard and the feral children (savage children) – hope that the savage child could be remediated – the birth of behaviourism
- The industrial revolution, statistical norms and the good working body – the body rehabilitated in the asylum
- The birth of psychotherapy and psychiatry (Charcot, Freud)
- The birth of diagnostic differentiation: Dementia Praecox, Schizophrenia, Psychosis, Autism
Differentiation is rooted in society’s economic needs
Physics-Envy
[T]he system of immediate causes is little more than the empirical recognition of symptoms, a kind of causal valorization of the qualities involved
With the physiology of fibres, a whole material network is in place that can serve as a perceptual support for the designation of immediate causes”
The search was now on for the simplest possible perceptible event, which might determine sickness in the most direct manner. – Foucault, History of Madness, 1965.
OBSERVATION
The Mismeasure of Man
“I must therefore conclude that [The Bell Curve’s] initial success in winning such attention must reflect the depressing temper of our time – a historical moment of unprecedented ungenerosity, when a mood for slashing social programs can be so abetted by an argument that beneficiaries cannot be aided due to inborn cognitive limits expressed as low IQ scores.” - Gould
Biological Determinism
“The claim that ‘mental illnesses are diagnosable disorders of the brain’ is not based on scientific research; it is a lie, an error, or a naïve revival of the somatic premise of the long-discredited humoral theory of disease.” – Szasz
“How can we help a child if we label him as unable to achieve by biological proclamation?” - Gould
The Site of Rationality?
“Is it normal to use only spoken language as the accepted currency for exchange of interests? It is certainly usual or normal for talkers to talk, but if you are not a ‘talker’ you might use other methods to converse” (Lawson, 2008).
“Someone who judges things by appearances and sense perception rather than apprehending their ideal forms is said to be suffering from simple-mindedness. This points to the difficult position of the head. It has claimed autonomy from the body.” (Caverero on The Republic)
The Radius of Intelligence
“My concerns and worries are trapped within me somewhere in my depths, maybe in my roots, maybe in my bark or all around my radius…but where [does the tree] keep it’s mind?” – Mukhopadhyay, The Mind Tree
The Cost of Normality
“What they don’t see is the real cost of normalization, which can be very high indeed. Autism runs all the way through. It is a deep neurological difference. It can be no more ‘stripped away’ or cured than our gender or race can be ‘cured’ or taken away. It’s that central to our being” – Winter, Loud Hands Speaking, 2012.
Supporting Autistic Bodies, Communication, Relationship and Knowledge
Wait
Listen/Watch/Sit
Enable
Reflect
Rethink
Create
Accept
Interdependent Relationship
Recognition of the freedom of the autistic body – flapping, whooping, jumping – support for autistic bodies to occupy spaces
Reconceptualization of embodied space and rights – who has the right to occupy spaces/ who does not/ how do bodies have to fit within spaces?
Reflection of our role in interactions – are we controlling? Do we have a goal? What is that goal? Who does it serve?
How can we monitor the pace, tone, voice?
Supported Communication
Inclusion, but…
SUBSTANTIVE EQUALITY
Conclusion
I exist in an important sense for you – Caverero
The exposure and vulnerability of the other makes a primary ethical claim
on me – Arendt