Supporting Autistic Rights Considerations for Clinicians, Researchers & Caregivers Estée Klar, PhD Candidate Critical Disability Studies, Department of.

Supporting Autistic Rights

Considerations for Clinicians, Researchers & Caregivers

Estée Klar, PhD Candidate

Critical Disability Studies, Department of Health Policy & Management, York University, Toronto

[email protected]

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