Culture of Disability

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					Perceptions of Disability

Understanding Occupation and
 Ability in Antigua and Rural
    Highland Guatemala
The Culture of Disability
Building upon pilot research conducted during the
  2010 NAPA-OT Field School, this presentation
       will address a relative understanding of
   “disability” and how it affects the occupational
       justice of those labeled as people with

• What roles do family and other close members assume
  when caring for a person with a disability
• How does one perceive the disability they have and what
  kind of narrative do they portray in their community
• What stigmas revolve around disability
• Western vs. Traditional healthcare
• Occupation and Independence
• Who?
  – Ladinos
  – Indigenous
  – Foreign Contacts
• Instruments
  – In Depth Interviews
  – Focus Group Discussion
  – Informal interviews
Ethical Considerations
• As an Anthropology Student
  – My Introduction and Background
  – Sense of Curiosity
  – Relative Respectfulness
• Stigmatization of Disability
• Explanatory Models of Health and Disability
• Perceptiveness to Personal Identity
  – Spanish as a Language Barrier
  – Cultural Norms of Narratives
Theoretical Framework
• Disability and Infant Mortality Rate
  – Jill Replogle and The Lancet Journal
     • In 2000, World Rate of IM dropped 13%; 35% in
       Latin America – WHO
     • While Perinatal disorders claim ownership to the
       highest percentage of IMR, it too is on the decline
       – PAHO
     • However, as these rates fall, more children survive
       with disabilities – a cause for concern with lack of
       education and resources
        – Hermano Pedro
               Source: Jill Replogle. “Guatemalan’s Disabled Children Face a Lifetime of Challenges”
Hermano Pedro

                                          Photo courtesy of Erica Skogebo Edwards

 Photo courtesy of Rachel Hall-Clifford

              Photos courtesy of Erica Skogebo Edwards
The Colonial, Ladino and
   Indigenous World View

             Photos courtesy of Rachel Hall-Clifford
•    My Results are Divided into Four
    1.   Guatemalan Persons
    2.   Guatemalans with Disabilities
    3.   Foreign Persons
    4.   Foreigners with Disabilities*
•    Results Consist of Narratives, Interview
     Responses and Observations of Physical
Guatemalan Persons
• Care, Resources and Education
  – Tecun Uman
  – Aguas Calientes
  – Street Map and Conversation
• Stigma via Labeling
  – Insults
  – Jokes
• Linguistic
  – Empedidos
…With Disabilities
• Narratives
   – Transitions
      • Passive and Active
• Linguistic
   – Minusvalidos vs Discapacidad
• Observation of Occupations
   – Transitions
   – Hermano Pedro
• Resources
   – Municipal
   – Law
Foreign Persons
• Stigma Through Communication
  – The Case of Hermano Pedro’s Volunteers
• Stigma Through Classification
  – La Limonada and Sister Kate
• Result from Volunteering
  – OT’s and Hermano Pedro
…With Disabilities*
• Why the Asterisk?
• Conversations with Kara
  – Narrative on both Self and Cultural Perception
    of Physical State
• Conversations with Devva
  – Strategy of Communication

•   Ability through disability
•   Social Networks
•   Voice in Government
•   Future Research Considerations