The Relationship between Professional and Lay Expertise within an Advocacy Field: Historical Changes in the 'Intellectual and Developmental Disability' Construct
Restricted (Penn State Only)
Author:
Wolff, Elise
Graduate Program:
Sociology (MA)
Degree:
Master of Arts
Document Type:
Master Thesis
Date of Defense:
June 07, 2022
Committee Members:
Gary J Adler, Jr., Thesis Advisor/Co-Advisor Charles Seguin, Committee Member David Baker, Professor in Charge/Director of Graduate Studies Alan M Sica, Committee Member Sarah Brothers, Committee Member
Keywords:
classification categorization identity social movements disability studies disability rights intellectual disability developmental disability expertise
Abstract:
Categorizations are not neutral and both reflect and shape how we conceive of similarities and differences. Members of social movements and professional organizations often deal explicitly in shaping categorizations for framing or professional ends. This paper examines the history of the disability rights movement and uses the case of intellectual and developmental disability (IDD) advocacy to study this process of changes in categorizations more closely. Drawing on primary and secondary materials from the late nineteenth century to the present, I trace the relationship between what became three major segments of the field—professional, parent, and self-advocate—and their shared and divergent interests and constructions of disability as a result. How do a field’s primary concepts shift over time with the addition of interest groups? And how do insurgent and established groups work through issues revolving around categorization? Throughout the history of the field in the United States, what is currently called intellectual and developmental disability proves to be a surprisingly ambiguous category with significant attention and recurring debates over defining it. However, I also find that there is a level of consensus among the three major segments that IDD is both a biological and social reality. I argue that these two factors—ambiguity and thin consensus regarding the duality of IDD—enable the three segments to co-exist in an expanding field.
