A133 stories about illness and stories about life

1. Stories about “illness” and stories about life
Approaching a forgotten generation of persons with intellectual disabilities
Create a more inclusive world
RI WORLD CONGRESS • 25–27 October 2O16
Edinburgh International Conference Centre, Scotland
Prof. Dr. Erik Weber
e.weber@eh-darmstadt.de
Ev. Hochschule Darmstadt
University of Applied Sciences
Zweifalltorweg 12
64293 Darmstadt - Germany
RI WORLD CONGRESS • 25–27 October 2O16

2. „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)

3. ..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)

4. 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-optimistic
concepts 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. Selbstverständnis
und Aufgaben der Behindertenpädagogik. München: Reinhardt.
changing processes in German “disability system”

5. …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…:

6. source: Psychiatric Hospital- Riedstadt in the 80ies

7. • 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

8. • 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

9. • 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)

10. participation and exclusion
self-determination and heteronomy
autonomy and dependence
isolation and violence
methods – dimensions of analysis

11. • 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

12. the story of Mrs. Baum
(excerpt from a life story of a woman
in the Hessian Heilpädagogischen Heime; see: Weber, Lavorano, Knöß 2016 43ff.).

13. • 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_201
5.pdf (24.09.2016)

14. …thank you for your attention

15. 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