SLIDE 1: Conference Logo: Black sans serif text says, “BACK TO THE FUTURE”. To the right, digital font in bright, bold orange says, “2024”. Underneath, [NCIL Logo: National Council on Independent Living] Annual Conference on Independent Living. 2024 Annual Conference on Independent Living BACK TO THE FUTURE Presented by the National Council on Independent Living SLIDE 2: Revisiting the 12 Independent Living Pillars through a global and intersectional lens 23 July 2024 Nadia Hadad, Co-chair of the Board of ENIL and member of the Executive Committee of EDF Teodor Mladenov, Senior Lecturer, University of Dundee, and Coordinator of ENIL’s Independent Living Research Network SLIDE 3: The European Network on Independent Living (ENIL) a membership organisation led and controlled by disabled people established in 1989 with a mission: to advocate and lobby for Independent Living values, principles and practices, namely for a barrier-free environment, provision of personal assistance support and adequate technical aids, together making full citizenship of disabled people possible (ENIL, n.d.) SLIDE 4: Key principles of ENIL’s work solidarity peer support self-representation cross-impairment self-determination (ENIL, n.d.) SLIDE 5: Original ‘core services’ at the Physically Disabled Students’ Program (PDSP) in 1970-72 personal assistance (support with finding assistants/attendants) housing (support with finding accessible housing) technical aids (wheelchair repair and redesign) advocacy (support with accessing benefits and services) (Evans, 2002; Shapiro, 1993; Zukas, 1975) Key principles: disability is a social problem not a medical one disabled people should be in control of their support the support provided should be comprehensive (holistic, integrated approach) full community integration cross-disability coverage (based on Zukas, 1975; see also Evans, 2002: 6) SLIDE 6: Services at CIL Berkeley in late 1970s personal assistance housing technical aids advocacy (including organising campaigns and protests) legal advice and litigation employment / job development (job search, awareness raising among employers) peer counselling/support (psychological support, empowerment towards self-determination) transport (including own service – an adapted van) deaf services, blind services (communication support: sign language interpreters, readers) (Kleinfield, 1979; Heumann, 2004: 364-365) SLIDE 7: Services at CIL Berkeley in late 1980s New trends, as reported by Racino (1989): IL skills training for people with intellectual disabilities youth services (peer support, mentoring, job search) Individual advocacy (counselling for benefits) increasingly substitutes systemic advocacy (campaigning work): ‘CIL continues to be actively involved in both individual advocacy and systemic advocacy, though many of the staff members report 80-99 % of their time is now spent on supportive services.’ (Racino, 1989: n.p.) SLIDE 8: The 7 Needs of Derbyshire CIL (DCIL) – early 1980s information (about entitlements, available supports) peer counselling housing (accessible and affordable) technical aids personal assistance transport (accessible and affordable) access (to the built environment) (Davies, 1990: 7; Hunt, 2019: 156) SLIDE 9: The 12 Pillars of IL In 1989, the 7 Needs evolved into 11 Needs, adding: employment education income support (benefits) advocacy (Evans, 2002: 7; Hunt, 2019: 157) Later, the 11 Needs evolved into the 12 Pillars of IL, adding: healthcare (Disability Rights UK, n.d.; ENIL, 2023; Spectrum CIL, n.d.) SLIDE 10: The 12 Pillars of IL at a glance Accessibility: Full access to our environment Transport: A fully accessible transport system Technical aids: Appropriate technical aids/equipment Housing: Accessible / adapted housing Personal assistance: Personal assistance to enable an independent lifestyle Education: Inclusive education and training Income: An adequate income Employment: Equal opportunities for employment Information: Appropriate and accessible information Advocacy: Advocacy (towards self-advocacy) Peer support / counselling: Empowering counselling services Healthcare: Appropriate and accessible healthcare provision (based on Spectrum CIL, n.d.: n.p.) SLIDE 11: The UN Convention on the Rights of Persons with Disabilities (CRPD) Core elements of Article 19, according to General Comment No 5 (para. 38): legal capacity ‘To ensure the right to legal capacity, in line with the Committee’s general comment No. 1, to decide where, with whom and how to live for all persons with disabilities, irrespective of impairment)’ housing accessible mainstream services (including information and communication technologies) personalised disability-specific support services (e.g., personal assistance) data collection ‘To collect consistent quantitative and qualitative data on people with disabilities, including those still living in institutions’ SLIDE 12: The UN Convention on the Rights of Persons with Disabilities (CRPD) Global application of Article 19 (paras 7 and 22, General Comment 5): Reflects the diversity of approaches to human living and its content is not biased towards certain cultural norms or values Living independently and being included in the community is a basic concept of human living ‘It means exercising freedom of choice and control over decisions affecting one’s life with the maximum level of self—determination and interdependence within society. This right must be effectively realised in different economic, social, cultural and political contexts. All persons should be free to choose to be active and belong to a culture of their own choice, with the same degree of choice and control over their life as other members of the community Independent living is not compatible with the promotion of a ‘predefined’ individual lifestyle SLIDE 13: ENIL’s proposal for additional pillars access to supported decision-making knowledge about IL history, philosophy, and organising support for sexual and reproductive rights access to internet and digital technology access to legal aid support for transitions to adulthood, higher education, employment, from parental home, and from institutional care SLIDE 14: ENIL’s proposal for additional principles adopt an intersectional perspective consider overlaps between disability and older age, gender, sexuality, poverty, climate change, and locality ensure IL in emergency situations armed conflicts, natural disasters, pandemics) co-produce disability research decolonise IL engage with – and promote – local knowledges and practices regarding self-determination (‘choice and control’) develop culturally sensitive, locally appropriate Independent Living ideas and practices SLIDE 15: Discussion questions What are the current priority pillars in your state or country? How to make the IL Pillars framework more inclusive? diversity of impairments, ages, genders, ethnicities; culturally sensitive / decolonial; appropriate for both high-income and low-income contexts Are there additional pillars or principles that need to be considered? SLIDE 16: References Davies, K. (1990) ‘A social barriers model of disability: theory into practice. The emergence of the "seven needs“’, paper prepared for the Derbyshire Coalition of Disabled People. https://web.archive.org/web/20240324073420/https:/disability-studies.leeds.ac.uk/wp-content/uploads/sites/40/library/DavisK-davis-social-barriers.pdf Disability Rights UK (n.d.) ‘Independent Living. Disability Rights UK Factsheet F38’, online publication. London: Disability Rights UK. https://web.archive.org/web/20231108170115/https://www.disabilityrightsuk.org/resources/independent-living ENIL (n.d.) ‘About ENIL’, online publication. Brussels: European Network on Independent Living. https://web.archive.org/web/20231110111447/https://enil.eu/about-enil/ Evans, J. (2002) ‘Independent Living Movement in the UK’, online publication. Leeds: The Disability Archive UK. Available online at: https://web.archive.org/web/20231110120434/https://disability-studies.leeds.ac.uk/wp-content/uploads/sites/40/library/evans-Version-2-Independent-Living-Movement-in-the-UK.pdf Heumann, J. (2004) Judith Heumann, Pioneering Disability Rights Advocate and Leader in Disabled in Action, New York: Center for Independent Living, Berkeley; World Institute on Disability; and the US Department of Education 1960s-2000. An oral history conducted by Susan Brown, David Landes, Jonathan Young in 1998-2001. Berkeley, CA: Regional Oral History Office, The Bancroft Library, University of California, Berkeley. https://oac.cdlib.org/view?docId=hb9v19p0k9&brand=oac4 Hunt, J. (2019) No Limits. The Disabled People’s Movement – A Radical History. Manchester: TBR Imprint. Kleinfield, S. (1979) ‘Declaring independence in Berkeley’, Psychology Today, Vol. 13, No. 3, pp. 67–78. Reprinted and posted at: http://www.independentliving.org/toolsforpower/tools2.html Racino, J. A. (1991) ‘Center for Independent Living (CIL): Disabled People Take the Lead for Full Community Lives’. Syracuse, NY: Research and Training Center on Community Integration, Syracuse University. https://www.independentliving.org/docs4/racino91.html Spectrum CIL (n.d.) ‘“Rights not Charity” – 12 Basic Rights’, online publication. Southampton: Spectrum CIL. https://web.archive.org/web/20231110172314/https://spectrumcil.co.uk/wp-content/uploads/2015/04/SPECTRUM-12-Basic-Rights-2013 Zukas, H. (1975) CIL History. Report of the State of the Art Conference. Berkeley, CA: Center for Independent Living – Berkeley. https://web.archive.org/web/20231110174358/https://www.independentliving.org/docs3/zukas.html