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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]