Download rights - Inclusion Ireland

Rights vs. Risks: what’s the
priority?
Dr. Fintan Sheerin
Fintan Sheerin - [email protected]
Who am I?
Fintan Sheerin - [email protected]
Rights vs. Risks: what’s the priority?
• Is this the wrong starting point?
• What is the context for this question?
• Rights review committees
• Are we not talking about moving on from that
context?
Fintan Sheerin - [email protected]
Rights vs. Risks: what’s the priority?
• Is the new context not one of living where
other people live and as independently as one
can?
Fintan Sheerin - [email protected]
Independent Living
• The right of all persons regardless of age, type
or extent of disability to live in the
community…with all the duties and privileges
that this entails.
Ratzka (2002)
Fintan Sheerin - [email protected]
Independent Living
• Assumptions:
– Each life is valuable
– Regardless of a person’s disability they have the
right to choose
– People have the right to practice control over their
own lives regardless of the oppressive attitude
and practice of society
– Each disabled person has the right to fully
participate in society
Murphy et al (2006)
Fintan Sheerin - [email protected]
Independent Living
• Assumptions:
– Each life is value
– Regardless of a person’s disability they have the
right to choice
– People have the right to practice control over their
own life regardless of the oppressive attitude and
practice of society
– Each disabled person has the right to fully
participate in society
Fintan Sheerin - [email protected]
Independent Living
Assumptions
Challenges
Value
Dehumanisation and devaluing
Choice
(regarding goals & activities)
(in defining support system)
Control and client-making
Control over own life
(self-determination)
Disempowerment and removal of autonomy
Participation
Segregation and discrimination
Having a Voice
Congregation and professionalisation
Fintan Sheerin - [email protected]
Independent living
Dependent living
How does this happen?
What does this mean?
Fintan Sheerin - [email protected]
Independence Across the Lifespan
100.00%
90.00%
80.00%
Independence
70.00%
60.00%
50.00%
40.00%
30.00%
20.00%
10.00%
0.00%
0
5
10
15
20
25
30
35
40
45
50
Ages (years)
Fintan Sheerin - [email protected]
55
60
65
70
75
80
85
90
Independence Across the
Lifespan
100.00%
90.00%
80.00%
Independence
70.00%
60.00%
50.00%
40.00%
30.00%
20.00%
10.00%
0.00%
0
5
10
15
20
Ages (years)
25
30
Cognitive, Physical, Psychological, Emotional, Social, Sexual, Integrative Development
Social Skills, Social Norms, Social Mores, Occupational Knowledge & Skills
Fintan Sheerin - [email protected]
Independence for People with ID
100.00%
90.00%
80.00%
Independence
70.00%
60.00%
50.00%
40.00%
30.00%
20.00%
10.00%
0.00%
0
5
10
15
20
25
30
35
40
45
50
Fintan Sheerin - [email protected]
55
60
65
70
75
80
85
90
Time to Move on from…
Congregated Settings
Fintan Sheerin - [email protected]
Time to Move on from…
Professionals and Perpetual Model-Making?
Societal Oppression?
Charity?
The Dependency Tight-Rope?
The Focus on Risk?
The Margin!
Fintan Sheerin - [email protected]
Professionals and Perpetual Model-Making
Fintan Sheerin - [email protected]
Professionals and Perpetual Model-Making
• Consider, for a few moments, the models that
support/have supported intellectual disability
service provision
Fintan Sheerin - [email protected]
Professionals and Perpetual Model-Making
Congregated
Model
Moral
Model
Medical
Model
Fintan Sheerin - [email protected]
Social
Model
Disability
Model
Professionals and Perpetual Model-Making
•
•
•
•
Starting Point:
Aim:
Means:
Who:
Congregated
Model
Fintan Sheerin - [email protected]
Disorder
Control
Congregation
Custodians
Professionals and Perpetual Model-Making
•
•
•
•
Starting Point:
Aim:
Means:
Who:
Moral
Model
Fintan Sheerin - [email protected]
Sin
Repentance
Congregation
Religious
custodians
Professionals and Perpetual Model-Making
• Starting Point:
• Aim:
• Means:
Medical
Model
• Who:
Fintan Sheerin - [email protected]
Person’s impairment
Cure, care for,
rehabilitate
Hospitalisation,
positivistic
measures
Medical doctors,
nurses,
psychologists…
Professionals and Perpetual Model-Making
• Starting Point:
• Aim:
• Means:
• Who:
Social
Model
Fintan Sheerin - [email protected]
Society’s exclusion
Societal change
Social action,
equality
Sociologists,
disability activists,
academics
Professionals and Perpetual Model-Making
• Starting Point:
• Aim:
Disability
Model
• Means:
• Who:
Fintan Sheerin - [email protected]
Dominating attitudes
of professionals,
social discrimination
Deconstruction of
‘disability’
Social activism,
human rights, legal
activism
People with
disabilities
Professionals and Perpetual Model-Making
•
•
•
•
The façade changes…
The professionals change…
The model changes…
But…for many people with intellectual
disabilities…
Nothing Changes!
Fintan Sheerin - [email protected]
Professionals and Perpetual Model-Making
• Who usually defines the model??
Professionals, academics, researchers,
disability activists…
Fintan Sheerin - [email protected]
Professionals and Perpetual Model-Making





Fintan Sheerin - [email protected]
Maintaining
the Status
Status Quo
Quo
Changing the
Specialist support
Frontline Carers
Services
Citizens
Human Beings
Fintan Sheerin - [email protected]
Political/Social action
Social Oppression
Fintan Sheerin - [email protected]
Social Oppression
Congregated
Model
Moral
Model
Medical
Model
Social
Model
The Oppression Model
Fintan Sheerin - [email protected]
Disability
Model
Social Oppression (Freire and Sobrino)
• The Oppressed
– Good for nothing, know nothing…incapable of learning
anything…sick, lazy, and unproductive
– Deviants…rejects of life
– beings for others…lives are exploited for the betterment of
others…cheated in the sale of their labour
– Deprived of their voice and of their humanity
– Extend their trembling hands to receive the false charity of
their oppressors
– Life experience is characterised by injustice, cruelty and
death
Fintan Sheerin - [email protected]
Social Oppression (Wolfensberger)
Fintan Sheerin - [email protected]
The Oppression Model
• Creates objects of dread and of fear, “immoral, diseased,
irrational, mindless” (Rafter 1992)
• Dehumanises…leads to the point where the central focus of
service provision becomes one of control (Rafter 1992)
• Means of control is means not always acceptable in
mainstream society – becomes sanitised within the context of
professionalised practice
Fintan Sheerin - [email protected]
The Oppression Model
• This marginalisation not only physically separates people with
intellectual disability from mainstream society; it also
facilitates the movement of this group out of societal
consciousness so that they essentially become ‘forgotten’ by
society.
Fintan Sheerin - [email protected]
Charity
Fintan Sheerin - [email protected]
Charity
• ‘Virtues of participation, democracy, liberty, equality and
social solidarity’ (Taskforce on Active Citizenship 2007:3), do
not apply, and charity, rather than solidarity is afforded those
with intellectual disabilities…a form of charity that is, in fact,
false generosity in its essence and antonymic to solidarity.
• Involvement of formal carers has its basis in a form of
generosity not centred on the virtues of civic society. If it was,
marginalisation of people with intellectual disabilities and
arbitrary denial of their human rights would no longer be an
issue.
Fintan Sheerin - [email protected]
Charity
• They become objects of charity (UN 2010) ‘extending their
hands’ (Freire 1993:27) to receive the generosity of others.
• As long as that goodwill is directed solely towards the
provision of care/service for disabled individuals, it maintains
those individuals in their states of disability.
• The status quo is protected, with generations of carers and
service personnel metaphorically reaping the good things of
life on the backs of those, on whose disablement their
comforts depend (Freire 1993; Sobrino 2008).
Fintan Sheerin - [email protected]
Charity
• This view fundamentally challenges the base of service
providers and professionals who have dedicated many years
to the service of people with disabilities.
• Furthermore, Freire suggests that, by dehumanising others,
even unwittingly, the oppressors themselves become
dehumanised.
Fintan Sheerin - [email protected]
The Dependency Tight-Rope
Fintan Sheerin - [email protected]
Fintan Sheerin - [email protected]
Fintan Sheerin - [email protected]
Fintan Sheerin - [email protected]
Fintan Sheerin - [email protected]
rights
Fintan Sheerin - [email protected]
A Strategy for Equality
1996
Criminal Offences
Sexual Offences Act 1996
UN Convention on
The Rights of People
With Disabilities 2006
Modern Capacity
Legislation
Fintan Sheerin - [email protected]
Fintan Sheerin - [email protected]
Loss of control over life
Discontinuity
Deindividualisation
Congregation &
regimentation
Relegation to lower status
Rejection by society
Deviant-making
Marginalisation
society
…where normal life takes place…
…where people can have the ‘good
things in life’…
Material poverty
Impoverished experience
Exclusion from value
systems
Fintan Sheerin - [email protected]
Dehumanisation
Life-wastage
Brutalization
Feeling of worthlessness
• Increased mental health
problems
• Inadequate access to
mental health services
• Inadequate access to
health services
• Poor health outcomes
society
…where normal life takes place…
…where people can have the ‘good
things in life’…
• Inadequate access to
education
• Inadequate access to
work
• Presumed lack of
capacity & loss of control
Fintan Sheerin - [email protected]
• Inadequate access to
mental health services
• Specialist mental health
practitioners
• Poor health outcomes
• Specialist health
practitioners
society
…where normal life takes place…
…where people can have the ‘good
things in life’…
• Education/Work
• Special Schools/
Sheltered Workshops
• Presumed lack of
capacity & loss of control
• Withholding of rights
Fintan Sheerin - [email protected]
• Inadequate access to
mental health services
• Specialist mental health
practitioners
• Poor health outcomes
• Specialist health
practitioners
society
…where normal life takes place…
…where people can have the ‘good
things in life’…
• Education/Work
• Special Schools/
Sheltered Workshops
• Presumed lack of
capacity & loss of control
• Withholding of rights
Fintan Sheerin - [email protected]
• Parents of disabled ‘impure’
– At a meeting in Sicily a bishop was quoted as saying that
"according to scientific research" 90 per cent of
handicapped people had been born to parents who had
"not entered into marriage in a pure state".
(12th April 1997) The Times
Fintan Sheerin - [email protected]
• Children with disabilities should be sterilised as
babies
• What would be the product of persons with Down
Syndrome?
• People with Down Syndrome cannot love and should
not be allowed to have relationships.
• All people with severe learning disabilities should be
sterilised.
Adrian Kennedy Phone Show – FM104 (22nd July 2009) – source BCC
Complaints Decisions 2nd September 2009
Fintan Sheerin - [email protected]
• 38% of respondents agree that people with intellectual
disabilities or autism should attend the same schools as
children without disabilities.
• 34% of respondents disagreed that people with intellectual
disabilities or autism should have children if they wish.
• 37% agreed adults with intellectual disability or autism should
have children if they wish.
• 21% would object if a child with intellectual disabilities or
autism were in class with their child.
NDA 2012
Fintan Sheerin - [email protected]
Significance of this for Rights and Equality
• Acceptance of the devaluation of people with
intellectual disabilities has arguably become
enshrined in society and in society’s response to
these people.
• If we do not focus on this problem, we will never
move on and the concept of rights vs. risks will
remain one that disables.
Fintan Sheerin - [email protected]
‘…while both humanization and dehumanization
are real alternatives, only the first is the
people’s vocation.’
Freire 1996:25
Fintan Sheerin - [email protected]