Stories about “illness” and stories about lifeApproaching a forgotten generation of persons with intellectual disabilitiesCreate a more inclusive worldRI WORLD CONGRESS • 25–27 October 2O16Edinburgh International Conference Centre, Scotland

Prof. Dr. Erik Webere.weber@eh-darmstadt.de

Ev. Hochschule Darmstadt University of Applied Sciences Zweifalltorweg 1264293 Darmstadt - Germany

RI WORLD CONGRESS • 25–27 October 2O16

„Often fear of what could happen, paralyzes any educational action. It remains in a theoretical discussion and then is

forced to offer solutions without letting something really happen“

(Cuomo 1989; own translation).

…in memoriam Prof. Dr. Nicola Cuomo ( 03.05.2016)

..where we are…:

https://en.wikipedia.org/wiki/Hesse

cf.: http://www.vitos-teilhabe.de/kalmenhof/teilhabe-homepage.html (27.08.2016)

cf.: https://en.wikipedia.org/wiki/Hesse (27.09.2016)

medical-curative concepts of man

separation/hospitalisation/living in institutions or psychiatric units

normalization

self-determination empowerment

integration inclusion participation

special institutions/de-hospitalization

pedagogical-optimisticconcepts of man

1946- 1960er 1960 – 1990 from about1990

de-institutionalization

integrative-accepting concepts of man

custody aid assistance

extermination

cf:Fornefeld, Barbara (2008).Menschen mit Komplexer Behinderung. Selbstverständnisund Aufgaben der Behindertenpädagogik. München: Reinhardt.

changing processes in German “disability system”

…in the past special education has contributed to social exclusion (despite „good will“), using special methods and special institutions extrapolating the „speciality“ of their clientele…

Behindertenpädagogik hat in der Vergangenheit (trotz ‚guter Absichten‘) immer auch zu gesellschaftlicher Exklusion beigetragen, indem sie durch besondere Methoden und eigene Institutionen die Besonderheit ihrer Klientel fortgeschrieben hat…

(comp. Moser/Sasse 2008, 51).

…basic dilemma…:

source: Psychiatric Hospital- Riedstadt in the 80ies

• revealing scandalous conditions in the psychiatric hospitals by German psychiatry Enquête (1975)

• deinstitutionalization (of people with so-called intellectual disabilities from psychiatric hospitals)

• 1989: foundation of the “HPE”; 5 sites in Hessen• persons: people with severe and / or complex

disabilities; usually associated with challenging behavior• 1996, the “HPE” are established as "permanent

establishments" and not, as originally planned, disbanded after 10 -15 years

• 2014: 25 years of HPE as an external reason for the study• today: 500 people in 40 group homes• since 01/01/2016: restructuring-process; now called

"Vitos participation"

background / occasion of the study

source: HPE Weilmünster; own photography

• How are former living conditions of the persons in the psychiatric hospitals perceived with the distance of many years?

• Are there memories of the reform-process?• How is this process perceived by the distance of many years?• How did their own lives change in the last 25 years?• What are their dreams and wishes for the future?

key questions of the research

• analysis of the life stories of selected persons in the five Hessian HPE using a “re-historicizing perspective” (2 persons per HPE)

• analysis of medical records• document-analysis (development reports, assistance and / or

support plans; other biographical documents and documentaries)

• biographical interviews about their life stories• using “diagnostic reports” by students (participant observation;

interviews and document analysis)

methods used – (overview)

participation and exclusion

self-determination and heteronomy

autonomy and dependence

isolation and violence

methods – dimensions of analysis

• distribution of locations in Hessen, partly in remote locations• contacting the persons with ID• assistant/deputy surveys• informed consent• cooperation with the research field• to counteract a possible objectification of those interviewed

(by a critical reflection and maximum participation of the people themselves in the study)

methodological challenges

the story of Mrs. Baum(excerpt from a life story of a woman

in the Hessian Heilpädagogischen Heime; see: Weber, Lavorano, Knöß 2016 43ff.).

• Committee on the Rights of Persons with Disabilities• 13 May 2015 Living independently and being included in the community (art. 19)

„The Committee is concerned about the high levels of institutionalization and the lack of alternative living arrangements or appropriate infrastructure, which present additional financial barriers for persons with disabilities. (…) “.

challenge: concluding observations on the initial report of Germany

http://www.institut-fuer-menschenrechte.de/fileadmin/user_upload/PDF-Dateien/Pakte_Konventionen/CRPD_behindertenrechtskonvention/CRPD_Concluding_observations_on_the_initial_report_of_Germany_May_2015.pdf (24.09.2016)

…thank you for your attention

Cuomo, Nicola (1989). Schwere Behinderungen in der Schule. Klinkhardt. Aus dem Italienischen übertragen und überarbeitet von Jutta Schöler. Klinkhardt-Verlag.Fornefeld, Barbara (Hg.) (2008). Menschen mit Komplexer Behinderung. Selbstverständnis und Aufgaben der Behindertenpädagogik. München, Basel: Reinhardt.Moser, Vera; Sasse, Ada (2008). Theorien der Behindertenpädagogik. München; Basel: Reinhardt-Verlag.Weber, Erik/ Lavorano, Stefano/ Knöß, David Cyril (2016). Von Krankengeschichten und Lebensgeschichten. Annäherungen an eine vergessene Generation. Studie zur Lebenssituation der Bewohner_innen der hessischen Heilpädagogischen Einrichtungen (HPE) 25 Jahre nach den Auszug aus de Psychiatrie. Darmstadt/Idstein: Vitos Teilhabe.

references