WHY ME: JEWISH PARENTAL RESPONSES TO MENTAL DISABILITY

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WHY ME? JEWISH PARENTAL RESPONSES TO MENTAL
DISABILITY

• Carolina Valdebenito Author Patrick Devlieger.
  Co-Author
• PhD candidate Dr. Professor.
• Social and Cultural Anthropology Social and
  Cultural Anthropology
• Interculturalism, Migration and Minorities Centre
  Interculturalism,
  Migration and Minorities Research Centre
  Research Centre
• Disability and Culture International
  Network Disability and Culture International
  Network
• Katholieke Universiteit Leuven, Belgium
  
  Katholieke Universiteit Leuven, Belgium
• carolina.valdebenito_at_soc.kuleuven.be
  
  patrick.devlieger_at_soc.kuleuven.be

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Outline

• Research Problem
• Material and Methods
• Description of fieldwork
• Theoretical framework
• 3 Results
• Discussion
• Preliminary conclusions
• 6. Acknowledgements

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Research Problem

• How mental disability is understood by the Jewish
  community in Antwerp taking into account
• Jewish parents perceptions of their own mentally
  disabled children
• Different types and levels of disability (mental/
  physical, genetic / non- genetic)
• Different levels of religiosity (from
  ultra-orthodox to secular)
• Historical evolution of Jewish habits and beliefs
  from ancient times until now.

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Material and Methods

• The methodological approach is ethnographic, with
  an emphasis on social discourse and observation.
  Consequently, the techniques or tools are
  qualitative without statistical representation.
• The structure of the interviews has been based on
  topics of discussion more than on closed
  questions. If possible, the interviews have been
  recorded.
• The analysis of the data will be through content
  analysis using the Krippendorf methodology

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Description of Fieldwork

• Jewish Institution for mental disabled persons
  called Tikvatenoe, located in Antwerp.

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Description of Fieldwork

• Sept 2007 Starting doctoral program at
  Katholieke Universiteit Leuven, Belgium, under
  the supervision of Professor Patrick Devlieger.
• October 2007 First contact with Tikvatenoe,
  (Jewish Institution for mental disabled persons)
• November 2007- ongoing Conducting fieldwork at
  Tikvatenoe

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27 day-boarding 8 Boarding school students -21
years 13 Boarding school students 21 years 5
Foreign students 70 Therapists and
professionals,(most of them part- time and
non-Jewish) 6 men therapists non Jewish and 1
bus-driver non-Jewish Jewish volunteers, 3
religious leaders or rebbes non-rabbis and 1
coordinator of boarding school
Tikvatenoe
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1
3
day- boarding school
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Children between 12 and 18 years of age (or
extended to 21), with a mild or moderate mental
handicap and/or specific learning and behavioral
problems and/or a motor handicap. The children
must have school skills equivalent to the first
year for arithmetic and language Fieldwork
Experience Observative-participation.
2007-2008 Some activities developed Visit the
park with children, participation during the
preparation of catering service, observation of
preparation for Jewish Carnival, (Purin),
observation of math, religion and speech
therapies and lessons.
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2
Children from 0 to 6 years with a mild to severe
mental handicap, with or without an associated
physical, sensory, behavioral and/or emotional
problem. Fieldwork Experience Participative-ob
servation 2007-2008 Some activities developed
Participation during mealtimes, observation of
the children during their spare time,
participation in pool therapy and music therapy,
observation of math, religion and speech
therapies and lessons.
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3
Children between 6 and 10 years of age, with a
mild to moderate mental handicap and/or children
with autism, behavioral problem or a motor
handicap. The selected children must be capable
of pre-school skills. Fieldwork Experience
Observative-participation 2008-2009 Some
activities developed Participation during
mealtimes, observation of the children during
their spare time, observation of math, religion
and speech therapies and lessons.
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Children from 0 to 14 years with a primary motor
handicap and moderate, severe or profound mental
retardation. Fieldwork Experience Participative
-observation. 2008-2009 Some activities
developed Observation of music therapy,
participation during mealtimes, observation of
the children during their spare time.
Participation in Jewish Carnival (Purin).
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children between 6 and 14 years old, with at
least a moderate mental handicap. An additional
motor handicap is tolerated but should be
secondary. The children must be either mobile or
able to communicate.
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Fieldwork Experience Participative observation
and ongoing. 2008-2009 Some activities
developed Observation of the children during
their spare time, observation  during mealtimes,
participation in relaxation therapy and
hippotherapy, observation of speech therapies.
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Home for non-working persons Tikvatenoe's home
for non-working persons supervises adult men and
women with a moderate, severe or profound mental
handicap. Part of this facility is recognized
as a "nursing group", while the remaining places
are licensed as an occupational home. The age
groups are composed according to the demand for
support. We have opted for a structural division
between living and working.
Tikvantenoe

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II
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Belgian Society/ Flemish
VAGGA. Flemish center for mental health care
Jewish Community in Belgium
Consistoire Centrale Israelite de Belgique
Other Jewish institutions
Centrale 3- Jewish schools Cultural
Center Institute of Jewish Studies
Tikvatenoe
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Material and Methods

• To date I have conducted 61 interviews. They have
  included mothers and fathers, (23 recorded, 3 not
  recorded at the specific request of the
  informant) experts on Judaism and experts on
  disability (16). Therapists and caregivers (19),
  and 1 focus group with housekeepers (15 domestic
  servants)
• Also I have been in contact with different Jewish
  organizations which are in interaction with
  Tikvatenoe such as Consistoire Central Israelite
  de Belgique Centrale Central (Jewish Welfare
  Organization) VAGGA (Flemish Center for mental
  health in Antwerp. Special section for Jewish
  people) Tachkemoni (Jewish Regular School),
  Beit Limoud (Jewish school for children with
  learning problems).
• Furthermore, I have participated in fundraising
  events organized by Tikvatenoe, such as Fancy
  fair, Quiz evening, etc.

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Theoretical Framework

• For social sciences, the system theory allows the
  understanding of society as a system in
  inter-dependent and reciprocal relationships with
  other systems that produce stability, equilibrium
  and integration.
• This theory allows an understanding of the
  equilibrium that result from the social
  transaction between the system and its natural
  and social environment.

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Results
Others schools for learning problems or private
lessons
Normal schools
Tikvatenoe
Last Hope
Transitional
Parental expectations
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Results
Physical disability
Disabled persons
Mental disability
Genetic disease
Non-genetic disease
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Discussion

• Thus, if Jewish culture is understood as a
  partial system, we could argue that disability,
  as a concept, seems to be less developed, even
  though some Jewish encyclopedias mention topics
  related to this phenomenon. From a system theory
  perspective, disability appears to be an
  undifferentiated process, and therefore invisible
  and non-existent.
• But, according to the ethnographic research
  partially described earlier, it is obvious that
  this phenomenon exists in its various forms and
  there is an explanation for it.

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Conclusions
Binary codes Sacred/profane
Jewish system
Global society
Disabled persons
High spirituality
Something which can be fixed by technology
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Acknowledgments

• I would like to acknowledge and thank my
  informants in Antwerp the Jewish community of
  Antwerp the principals of Tikvatenoe where I am
  conducting my fieldwork, especially Mrs. Rosi
  Rosenberg the experts who helped me better
  understand disability and Judaism my
  supervisor, guide and advisor, Professor Patrick
  Devlieger, my Canadian English language
  editor and disability expert,  John Connors,
  and the Alban Program for their support.

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• Thank you