Let's talk about Independent Living!

1. Let's talk about Independent Living! Event: Rights and well-being of people with disabilities in Russia and the EU Date: 11-12 April 2019, Moscow, Russia Speaker: Kamil Goungor, Development Officer - ENIL

2. Who is Kamil Goungor? • 31, from Poland, but born and lives in Athens, Greece. Studied Communication and journalism • Development Officer of the European Network on Independent Living (ENIL) • Membership, communication, Freedom Drive Former ENIL Youth Network board member and EVS volunteer • Co-founder and secretary general of “i-living”; the first Independent Living organization in Greece • Chair of the European Disability Forum (EDF) Youth Committee • Activist and blogger

3. ENIL - European Network on Independent Living • Network, cross-disability for Independent Living • Grassroots organisation • Values: Self-determination, Self-representation, De-institutionalisation, Choice and Control • Access to society - social services, personal assistance, barrier-free environment, housing options, technical aids • Closing of Institutions • ENIL Freedom Drive

5. What is Independent Living? Dr. Adolf Ratzka: Definition of Independent Living “Independent Living is having same range of options and same degree of self-determination that people without a disability take for granted.” ENIL key definitions http://www.enil.eu/il-definitions/ A. Ratzka on ‘dependency culture’ http://www.independentliving.org/docs7/ratzka20071022.html

6. What is Independent Living (part2) • A human right • The only true way where the disabled person lives completely independently in the community, having 100% control on its own life, like everyone else

7. Independent Living means... In this animation called “Independent Living means…”, created by two of the i-living co-founders (Eva Lampara and Antonia Trikalioti) on the occasion of May 5th (European IL Day), is shown what we should have (and why), and what we have now in Greece (and not only): http://www.enil.eu/news/independent-living-video-goes-viral/

8. Article 19 of UN-CRPD:Living independently and being included in the community States Parties to the present Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that: • a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement; • b) Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community; • c) Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.

9. From Medical to Social model Medical modelof disability: disability as a “problem” of the disabled individual. It is not seen as an issue to concern anyone other than the individual. The focus is therefore on “fixing” or “curing” the individual. Or labeling and grouping people according the ‘defect’ in a protective, professionalized environment (institutionalization!) Social modelof disability: it is interaction with society that “disables” people, by creating barriers. It is society’s co-responsibility to reduce and remove them. Full citizenship, participation and equal opportunities are fundamental rights for all. This takes the focus away from what is “wrong” with a disabled person, and puts the emphasis on what we, as society, should all do in order to eliminate the barriers.

10. Medical vs Social model

11. IMPORTANT!!! Independent Living is for all disabled persons, no matter the level of support needed.

12. The JAG model Personal assistance is not just a privilege of the few, but a right of all disabled people. JAG is a non-profit organization in Sweden for people with multiple, severe disabilities including intellectual disabilities. • Choice and control over the assistance is maintained through supportive decision-making from a legal proxy • Service guarantor helps to supervise the assistants • The assistants are given development and training More details about their model here: http://www.jag.se/sites/default/files/Pa-manual_ENG.pdf

14. The right approach The example of Stephen Hawking. In the right environment, services, approach and support he was a world famous scientist. In the wrong one, he could be in an institution considered “finished” 

15. Personal Assistance Personal Assistance is a tool which allows for independent living. Personal assistance is purchased through earmarked cash allocations for disabled people, the purpose of which is to pay for any assistance needed. Personal assistance should be provided on the basis of an individual needs assessment and depending on the life situation of each individual (…). ENIL definition of PA

16. Personal Assistance part 2 • The Relationship between disabled people and PAs • Disabled people in control • Family’s role • Respect PA’s rights

17. The message • We all must promote and demand for Independent Living • All policies, on all levels, should be fully in line with the UN-CRPD • We don’t want cure, care or protection (we are not sick!). We want the right support to make our own decisions (good or bad, but ours) • We, disabled people, have to be united and fight together for our human rights. We cannot sit and expect others to “help” us. We have to be proud, strong and visible!

18. Thank you!kamil.goungor@enil.euwww.enil.eu