Katariina Hakala Finnish association on intellectual and developmental disabilities & Noora Hakala. Courage in Social Work 11.6.

Transcription

1 Anonymity Protection or exploitation? Methodological challenges in inclusive research with people living in disability services - Onko tutkimuskumppaneiden anonymisointi suojelua vai hyväksikäyttöä? Katariina Hakala Finnish association on intellectual and developmental disabilities & Noora Hakala Courage in Social Work

2 Noora Kun syntyy kehitysvammaiseksi niin sitten on siinä maailmassa. When you are born with intellectual disability then you are in that world.

3 Three ways of naming Noora Hakala; daughter, tytär Enni, Oskari and Ronja, only the first name, vain etunimi Research group, tutkimusryhmä: Anne Parkko and Sami Korhonen Irmeli Vuotila and Birgitta Lange, Petri Salonen and Antti Rissanen; Arja Hyytiäinen and Riitta-Elisa Juntunen Cartoon teacher Jenny Eräsaari Social work student Marita Kiviranta Responsible researcher FT Katariina Hakala

4 Developmental disability Developmentally disabled young person is equal with other people. Developmentally disabled have right to be free and live independent life. Too much care is not good. Caring is good but it should not be too much. Every human being also developmentally disabled is capable of taking care of herself. Every human being may go in the city alone. Can go to movies and concerts. Developmentally disabled can learn themselves to travel with buses with help of a guide. After that they can travel alone. If you are teased it is other s shame not yours. And it is not worth while to bother about that. I am an ordinary young who wants to have friends in the streets of Helsinki. Published in Hakala 2014 translated by K.H. Mostly performed by Katariina alone

5 There is muchto do to improve human rights! Challenges of independent living in disability services. November 2014 RATTI Solutions to challenging situationsin the individualhousing of peoplewith intellectual disabilities Ratkaisuja haastaviin tilanteisiin kehitysvammaisten yksilöllisessä asumisessa (RAY ) Picture in the cover by Noora Hakala

6 Noora 25years Informal, important, personal autoethnography lived together / epävirallinen, tärkeä, henkilökohtainen autoetnografia, jota eletään yhdessä expertice by experience as a mother and daughter / kokemusasiantuntijuus äitinä ja tyttärenä sharing and discussing together and with the system /yhdessä jakaminen ja keskustelut järjestelmän kanssa disability and being different or not / vammaisuus, ollako vaiko eikö olla erilainen unsystematically documented, private, not published, yet / ei ole tallennettu systemaattisesti, yksityistä aineistoa, ei julkaistu, ainakaan vielä Mother as professional researcher is getting paid, daughter not; whose expertice is recognized and valued? Äiti saa palkkaa, tytär ei, kenen asiantuntijuus tunnistetaan, tunnustetaan ja arvostetaan

7 There is much to do to improve human rights! Challenging situations in the individual housing for people with learning disabilities. Focus on cultural and historical discourses practices and modes of address in service system inclusion/exclusion dynamics citizenship, self determinance Critical interpretations on practices in personal services Names: Katariina Hakala, responsible researcher, the author Enni (research partner/expert by experience, female 31y) Oskari (research partner/expert by experience, male 57y) Ronja (research partner/expert by experience, female 20y)

8 Experienced Citizenship. Ordinary life, inclusion/exclusion processes in everyday life of people with intellectual disabilities. Ideas Successful choices Katariina Hakala & research group

9 The research group , H e l s i n k i, F A I D D, M a l m i S t a n d i n g : K a t a r i i n a, S a m i, J e n n y, I r m e l i, A n t t i, A r j a a n d R i i t t a - E l i s a ; S i t t i n g : M a r i t a, P e t r i, A n n e j a B i r g i t t a

10 Anonymity Protection or exploitation, or both?

11 Protection? Ethical principles generally emphasize of privacy; research as an intrution into privacy of unpredictable consequences of the research of the protection of those in vulnerable positions; people with disabilities par exellence, diagnosed dis-ability; need and right for supported decision making; who is supporting who is deciding? the self in self-determination? cultures of service practices in caring institutions and organizations; protection and avoiding risks as key principles of models coming from medical research; - limited applicablity in social research Ethical Review in the humanities and social and behavioural sciences not legislated but strongly recommended

12 Exploitation? Paradoxes: Authorship: academic reference practices; naming the experts vs. quotations from the data; hierarchies of references e.g. (taped) speech vs. written text; giving voice ; is the speaker giving her/his voice, subjectivity to the researcher, written name, authorship? reseach on system, on discources, not on persons, individuals; persons as co-researchers, partners, experts by experience practices of the service system based on law and national and international conventions; organizations and units obliged to transparency and responsibility of the practices; who is to be protected and from what? researcher s responsibilities for the partners resourses to follow-up; priviledge in project financed research? FAIDD: organizationalorientation to developing practices; development vs. critical research; critics should be the starting point for development; not always easy

13 Can the publicity protect? Who and from what? And who and from what, anonymity protects?