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Stephen Warr - Service User and Volunteer Naeem Arif – Executive Director

Future Talks living moves. Stephen Warr - Service User and Volunteer Naeem Arif – Executive Director. Disability in the United Kingdom 2010. Generally held concept…. People with Sensory Impairment. Daily Living Aids. Housing Adaptations. People with physical impairments.

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Stephen Warr - Service User and Volunteer Naeem Arif – Executive Director

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  1. Future Talks living moves Stephen Warr - Service User and Volunteer Naeem Arif – Executive Director Disability in the United Kingdom 2010

  2. Generally held concept… People with Sensory Impairment Daily Living Aids Housing Adaptations People with physical impairments People with LD & MH Disabled People need ... Accessible Transport Blue Badges / State Benefits etc Employment training and supported employment

  3. Lack of adequate support for employment and skils The facts are… People with Sensory Impairment inadequate support for independent living Inaccessible or lack of Houses People with physical impairments People with LD & MH People Inaccessible Transport Inaccessible environment and attitudes DISABILITY - Colin Barnes and Geof Mercer 2003 ISBN 978-07456-2509-6

  4. A journey towards shifting the balance of power ...Power to EmpowerDependence to IndependenceControl to SupportDisabled to Enabled

  5. A rough and bumpy ride The journey ...

  6. The journey ... Early treatment of disabledpeople • 1800s – upsurge of Christian humanitarian values first charities; • 1930s – people with mild, severe or profound learning difficulties described as ‘morons’, ‘imbeciles’ or ‘idiots’; • Civil rights and human rights movements in the 1960s: • questioned how power distributed and used in society; • highlighted inhumane treatment and conditions; • campaigned for closure; • led the way for disability movement. • Different cultures linked disease and impairment with sin; • Medieval times - some mental illnesses considered witchcraft, devil; • 1600s - people with mental illnesses ‘recover much sooner if treated with torture, instead of with medicines’; • 1664 – Great Plague of London reinforced religious views – disease, impairment, God’s judgment; • 1700s - Industrial Revolution, growth of institutions, asylums, workhouses - for ‘economically unproductive’;

  7. Portrayed in wheelchairs or using walking aids, often older ‘Zip ‘the Pinhead’ – a in the Barnum Circus, who had microcephaly Dr No – the villain in the James Bond film of the same name Captain Hook – the villain in Peter Pan Eric – the ‘villain’ with a facial disfigurement in ‘Phantom of the Opera’ ‘Crippled Tiny Tim’ - from Charles Dickens’ A Christmas Carol Needy or dependent The journey ... Examining the Perception of disabledpeople through history • Images or pictures - represented in limited ways; • Language or words used – invalid, crippled, handicapped, etc. • Described as brave, laughable, pitied, pitiable, pathetic or cured by a miracle; • Portrayed as a burden or an object of dread, fear, ridicule or curiosity; • Considered sinister or evil; • Assumptions or expectations – represented as needy or dependent.

  8. The Disability MovementChanges to government policies and post war initiatives • No real changes were seen until after the 1914-18 and 1939-45 wars - first Government Training Centre was built in 1919 due to political and moral appeal • Further boost was seen in 1939-45 due to the concerns of economic recovery • A government sponsored committee on the Rehabilitation and Resettlement of Disabled People was set up in 1943 • Disabled Persons (Employment) Act 1944 - still in operation • The Government policies and initiatives fell short to change the attitudinal and environmental barriers which made people with impairments to continue to experience ‘disability’

  9. The journey ... President Franklin D. Roosevelt Perception of disabledpeople through history on the other hand... • Disabled people disguise their own impairments: • in a position of power; • because of potential impact; • Former US President Franklin D. Roosevelt: • rare picture of him in a wheelchair

  10. Ed Roberts, USA, 1970 • fought for right to attend University in Berkeley, California; • obtained ‘accessible’ student accommodation; • formed ‘Rolling Quads’ with disabled peers; • became leader of first Center for Independent Living in 1971 in USA for the community at large • introduced private members’ bill, with a duty to provide care and support to disabled people; • first Minister for Disabled People in world, 1974; • challenged and changed attitudes towards disabled people; • introduced Motability Scheme; • introduced Civil Rights Bill, 1991; • joined House of Lords, 1997, as Lord Morris of Manchester Alf Morris, UK The journey ... The Disability Movement kept the pressure up1970s

  11. wrote to The Guardian newspaper in 1972; • inspired a united struggle against discrimination facing disabled people; • joined by Vic Finkelstein, disabled activist and university lecturer; • formed UPIAS (Union of Physically Impaired Against Segregation); UPIAS (Union of Physically Impaired Against Segregation): • development of UK disability rights movement; • Fundamental Principles of Disability, which later developed into Social Model of Disability; • raised awareness of the way that disabled people were treated; • highlighted imbalance of power between disabled people and social care staff; • promoted self-advocacy. Paul Hunt, UK The journey ... ‘Movers and Shakers’

  12. Stephen Hawking • Vinton Cerf, had hearing impairment, invented email so he could communicate with his wife, who was deaf, 1972; • Herman Hollerith, had learning disabilities, invented an automatic tabulating machine to process data in 1880s; founded the company that was later renamed as IBM (International Business Machines); • wrote ‘A Brief History of Time’, 1988; • one of the best known scientists of modern times; • form of motor neurone disease in his early twenties; • almost completely paralysed; • communicates via a custom-made computer and voice synthesizer; Disabled Inventors The journey ... More ‘Movers and Shakers’

  13. Vic Finkelstein Baroness Jane Campbell • Vic Finkelstein: • joined Open University to deliver first post graduate training on disability issues, in 1975, aimed at Social Workers; • one of the prime originators of the Social Model of Disability • Baroness Campbell of Surbiton: • co-founded, co-directed National Centre for Independent Living (NCIL); • former Chair of Social Care Institute for Excellence (SCIE); • Commissioner, Equality & Human Rights Commission; • Life Peer in House of Lords, cross-bencher; The journey ... More ‘Movers and Shakers’

  14. UN Convention on the Rights of Disabled Persons, 1975, calls for full economic and social integration of disabled people; Disability Alliance formed: relieve poverty, improve living standards of disabled people; break link between poverty and disability; produces Disability Rights Handbook annually; advises and lobbies Government on issues around income, poverty and disability The journey ... Support grows: 1970s onwards • First Coalition of Disabled People, formed 1981, to support disabled people to have more control; • direct experience of disability; • seek support and involvement of non-disabled people; • promote integrated and independent living • Association of Carers formed, 1981, provides support to carers by carers; • World Health Organisation (WHO): • International Classification of Impairments, Disabilities and Handicaps, 1981, • confusion between disability and impairment – ongoing;

  15. The journey ... Social Model of Disability: Impairments or Disabilities? • Impairments or Disabilities? • Social Model is clear: • Animpairment: • - individual difference, which may lead to individual limitation or impairment, but which is not the cause of exclusion. • Disability: • - is the disadvantage or restriction of activitycaused by contemporary organisation; • takes no or little account of people who have physical impairments; • thus excludes them from mainstream of social activities. • Disabled People or People with Disabilities? • Social Model is clear: • Disabled people: • - people who are disabled by the barriers they face in society. • People with disabilities: • an outdated term, still widely used, yet considered inappropriate; • people have impairments, not disabilities; • disability is experience of being disabled; • implies that s/he is a person with a problem

  16. The journey ... Support grows, legislation develops: 1980s • Disabled Persons Act 1981 introduced, aims to address issues of access and adaptations for disabled workers; • British Council of Disabled People (BCODP) formed, 1982, umbrella body for disabled people’s organisations in UK: • strives for full inclusion of disabled people in society and the workplace; • aims to bring down levels of poverty faced by disabled people; • First attempt to introduce anti-discrimination legislation by Jack Ashley, deaf MP, 1982; • People First formed, 1984, first user-led organisation for people with learning disabilities; • Wheelchair racing included in Olympic Games, 1984, as part of ‘exhibition programme’; • Companies Act 1985 requires large companies to publish policies on recruitment, training and promotion of disabled workers;

  17. The journey ... Support grows, legislation develops: 1980s • Lambeth Council (London Borough) aims to reach 3% quota of disabled employees by opening all vacancies only to disabled people, 1986 – controversial move - media accused them of being extremist; • Disabled Persons (Services, Consultation & Representation) Act 1986 requires that Social Services Departments provide written needs assessment for disabled people; • David Blunkett, first blind MP elected to House of Commons, 1986, later Home Secretary; • Conservative Government tightens criteria for benefits, 1986, aims to: • eliminate perceived ‘dependency culture’; • move towards individualistic, consumer-based approach to social care; • ‘Rights not Charity’ march held in London, 1988; • UN Declaration of Human Rights amended to specifically include the rights of disabled people, 1988;

  18. The journey ... Support grows, legislation develops: 1980s • Lambeth Council (London Borough) aims to reach 3% quota of disabled employees by opening all vacancies only to disabled people, 1986 – controversial move - media accused them of being extremist; • Disabled Persons (Services, Consultation & Representation) Act 1986 requires that Social Services Departments provide written needs assessment for disabled people; • David Blunkett, first blind MP elected to House of Commons, 1986, later Home Secretary; • Conservative Government tightens criteria for benefits, 1986, aims to: • eliminate perceived ‘dependency culture’; • move towards individualistic, consumer-based approach to social care; • ‘Rights not Charity’ march held in London, 1988; • UN Declaration of Human Rights amended to specifically include the rights of disabled people, 1988;

  19. The journey ... Funding, assessments and independence: 1980s • Independent Living Fund (ILF) introduced, 1988, aimed to: • support small number of severely disabled people on low incomes, in community; • run for 5 years, still running; • shift power to disabled people from professionals; • However, in1989 – Conservative Gov’t gave: • £7,000,000 funding to organisations run BY non-disabled people FOR disabled people; • £35,000 to organisations run BY disabled people; • Children Act (1989) introduced: • requires assessment for disabled children in respect of short breaks, holiday play schemes, care at home, aids and adaptations; and • provides limited financial support; • ‘Caring for People’ White Paper, 1989, introduced - aims to: • provide community care at home; • provide responsive range of services to disabled people and older people; • promote maximum independence;

  20. The journey ... A change in culture: 1990s • NHS & Community Care Act 1990 aims: • to develop needs-led approach; • for individually tailored care packages; • for Social Services Departments to become enablers, rather than providers; • BCODP publishes case for fully comprehensive anti-discrimination legislation, 1991: • based on outcome of research on discrimination faced by disabled people; • Disability Living Allowance (DLA) introduced, 1992, intended to: • promote self-assessment of needs; • replace routine medical assessment; • [however, the new UK government (Conservative/Liberal Democrat Coalition) has stated it intends to: • medically assess all recipients of DLA by 2013; • despite strong opposition by disability movement and disabled people’s organisations]

  21. a journey of shifting the balance of power ... ...the turning point

  22. ...seeing a culture changefrom holdingPOWERto EMPOWERMENT

  23. ...seeing a culture change from seeing disability first to seeing ability first

  24. ...seeing a culture change from dependencey to promoting independency

  25. ...seeing a culture change from holding control to devolving control

  26. SandwellDistrict ...seeing the evidence of a culture change in • The context: • Lies in the heart of the West Midlands • Industrial past • Population 287,000 • 21% are 60 and over (60,000) • 20% BME – mainly from Asian and African background • 22% with limiting long term illness e.g. CHD, diabetes, respiratory • In 2003 over 15,000 people with physical, sensory or learning disabilities were registered with local authority • Unemployment rate is higher than the national average • Academic achievements are lower than the national average

  27. ...seeing the impact of a culture change in Sandwell District Strategic & Critical Partnerships with LAs Promoting Social Capital Managing SLAs Participation in R & D For Product Design and Assessment Tools Structured Support & Engagement Key Business Partner For KPIs, LAA etc Information & Advice U Celebrating Achievements Disabled People in Control L O Delivering Bespoke Training Networking & Collaboration Social Enterprise Trading Activities Employment & Academic Achievements Advocacy & Peer Support Fundraising to Support Sustainability Accessible Holidays & Social Events Promoting Environmental Projects Awareness of Rights

  28. Future talks...Despite growing user engagement and involvement, there still remain many gaps in knowledge and understanding about the needs and service requirements of service users and their families. People who use health and social care services frequently tell us that assessments of their needs do not reflect or respond flexibly enough to their life circumstances. They also tell us that different support agencies use various assessments methods, so they have to tell their story many times and the information gained does not give a joined up picture of their health...so at the national level, the Future talks will continue to focus on the need of a policy change to achieve greater flexibility and independent living solutions which meet the needs of disabled people and their families.

  29. ...so where is the evidence of the culture change in Sandwell District? To see the evidence, learn and discuss what can be achieved through the devolution of power to disabled people and carers, integration and inclusion, join the Workshop ‘Together We Can’ by Ideal for All Great Britain

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